The Challenge of Culturally Sensitive Genetic Counseling
in a Multicultural Society:
A Case Study of the National Religious Society in Israel
Thesis submitted in partial fulfillment
of the requirements for the degree of
“DOCTOR OF PHILOSOPHY”
by
Merav
Siani
Submitted to the Senate of Ben-Gurion University
of the Negev
9.3.2016
Beer-Sheva
1
The challenge of Culturally Sensitive Genetic Counseling
in a Multicultural Society:
A Case Study of the National Religious Society in Israel
Thesis submitted in partial fulfillment
of the requirements for the degree of
“DOCTOR OF PHILOSOPHY”
by
Merav
Siani
Submitted to the Senate of Ben-Gurion University
of the Negev
Approved by the advisor
Approved by the Dean of the Kreitman School of Advanced Graduate Studies
9.3.2016
Beer-Sheva
2
This work was carried out under the
supervision of:
Dr. Orit Ben-zvi Assaraf
In the Graduate Program for Science & Technology Education
Faculty of Humanities and Social Sciences
3
Research-Student's Affidavit when Submitting the Doctoral Thesis
for Judgment
I Merav Siani, whose signature appears below, hereby declare that:
 I have written this Thesis by myself, except for the help and guidance
offered by my Thesis Advisors.
 The scientific materials included in this Thesis are products of my own
research, culled from the period during which I was a research student.
This Thesis incorporates research materials produced in cooperation with
others, excluding the technical help commonly received during experimental
work. Therefore, I am attaching another affidavit stating the contributions
made by myself and the other participants in this research, which has been
approved by them and submitted with their approval.
Date: _________9/3/2016________
Signature:______
Student's name: Merav Siani
__ ______
4
Acknowledgements
I would like to thank all the participants who enabled this PhD thesis to be possible.
First of all, my thanks to the genetic experts who were willing to spend an hour and a
half during their extremely busy schedule to participate in the interview.
I am grateful to the lecturers who agreed to open their classes for me, and enabled me
to pass the questionnaires to their students even though it took precious time from
their lesson.
I thank the students who were willing to participate in answering the questionnaires as
well as those who were willing to participate in the interviews.
I thank my fellow researchers, including Dr. Anat Mishori-Deri and Dr. Ayala
Frumkin for fruitful discussion through the validating process of the categories.
I thank Thom Rofe for the fruitful discussions, for her accurate remarks and editing.
I was extremely fortunate to have a very supportive supervisor Dr. Orit Ben-zvi
Assaraf. Orit helped me all along to plan my research, contributed ideas for
methodologies and made sure that the research will be accurate and reliable. The
discussions with Orit were always productive and taught me a lot. I thank Orit for
going through this process with me.
I would like to thank Ben Gurion University of the Negev in Be'er Sheva, the
Graduate Program for Science & Technology Education for their funding. These
funds enabled me to travel to a conference and become a member of the science
education research community.
I am grateful to my parents Uri and Rivka Cohen and my family for expressing their
confidence in my abilities to complete this mission. I would like to thank my children
Eitan, Yair, Hadas, Adi and Ori and my daughter-in-law Bat-chen for their patience
during these few years when I was much busier than usually, for encouraging me all
along and for being delighted with me throughout the highlights of the process.
Finally, I thank my beloved husband Shimon, who encouraged me all along, believed
in my abilities, assisted me with a lot of creative ideas and helped me complete this
task.
5
Contents
English Abstract………………………………………………………………………..….8
Key words………………………………………………………………………………....9
Author's note……………………………………………………………..………………10
General preface explaining the entire field and the structure of the Thesis...............11
Introduction…………………………………………………………………...11
Research questions………………………………………………………........11
Literature review……………………………………………………………...12
Overview of the chapters and how they integrate in the research……...…....16
The order of the chapters and how they form a continuous and logical
structure...........................................................................................................16
Methodology ……………………………………………………………….….18
Chapter 1: A qualitative look into geneticists' insights regarding culturally
competent genetic counseling and recommendations for its enhancement……………..22
Abstract………………………………………………………………………..22
Introduction……………………………………………………………………23
Theoretical background………………………………………………………..24
Materials and Methods………………………………………………………...27
Figures 1-4…………………………………………………………………29-31
Results…………………………………………………………………………33
Discussion……………………………………………………………………..42
Appendix 1…………………………………………………………………….45
Appendix 2…………………………………………………………………….46
Chapter 2: University students' attitudes towards genetic testing: A comparative
study…………………………………………………………………………………….47
Abstract………………………………………………………………………..47
Introduction and theoretical background ……………………………………..47
Materials and Methods………………………………………………………...50
Results…………………………………………………………………………54
Table 1 ………………………………………………………………………...54
Figure 1-5…………………………………………………………………..55-58
Discussion……………………………………………………………………..59
Appendix 1…………………………………………………………………….65
6
Chapter 3: The moral reasoning of genetic dilemmas amongst Jewish Israeli
undergraduate students with different religious affiliations and scientific backgrounds...70
Abstract………………………………………………………………………….70
Introduction……………………………………………………………………...70
Theoretical background………………………………………………………….71
Methods………………………………………………………………………….75
Figures 1-2…………………………………………………………………….77-8
Results…………………………………………………………………………...80
Table1-4……………………………………………………………………....82-89
Discussion………………………………………………………………………..90
Appendix 1…………………………………………………………………….....98
Appendix 2……………………………………………………………………….100
Chapter 4: Should I perform genetic testing? A qualitative look into the decision making
considerations of religious Israeli undergraduate students………………………………106
Abstract……………………………………………………………….106
Introduction…………………………………………………………...107
Table 1………………………………………………………………...109
Theoretical background……………………………………………….110
Methods……………………………………………………………….116
Table 2 ………………………………………………………………..121
Figures1-3………………………………………………………..126-128
Results………………………………………………………………...130
Discussion……………………………………………………………..142
Figure 4- 'The Triple C Model'………………………………………..143
General Summary and Discussion…………………………………………………......152
Main results………………………………………………………..….152
Discussion…………………………………………………………......153
Research significance…………………………………………………..156
Limitations of the study………………………………………………...158
Bibliography…………………………………………………………………………….…160
Hebrew abstract……………………………………………………………………...…….185
Hebrew key words………………………………………………………………...……….186
7
Abstract
Genetic counseling is an interpersonal process in which information is offered on
issues connected to human genetic diseases and their nature, inheritance, implications,
and recurrence in a family at risk. The central aim of my research was to examine and
analyze the components of culturally sensitive genetic counseling in a multicultural
society by investigating and characterizing the Israeli undergraduate students'
attitudes, moral reasoning and decision making considerations towards genetic
testing, counseling and dilemmas. The questions that guided this research were:
1.What characterizes culturally competent genetic counseling in a multicultural
society as perceived by experts in genetics during their counseling experiences? 2.
What are the attitudes of undergraduate Israeli students being part of a multicultural
society to genetic testing and to genetic counseling? 3. What are the moral
considerations of undergraduate Israeli students who are part of a multicultural society
regarding genetic testing and genetic counseling? 4. In a case study of the National
Religious students (who are part of a multicultural society): what characterizes their
considerations and decision making with regard to genetic testing and to genetic
counseling?
The population of this mixed-method approach study consisted of 15 genetic experts
from diverse hospitals and clinics and 51 National Religious students who were all
interviewed in depth. In addition, 490 religious and secular undergraduate students
were given a closed ended Likert type questionnaire and 449 religious and secular
undergraduate students from a variety of universities and colleges answered an open
ended questionnaire.
The findings from the qualitative analysis of experts' interviews paint a broad and
complex picture in the context of genetic counseling. I suggest that these findings
reflect issues relating to four key questions: 1) Why is culturally competent genetic
counseling important? 2) Who are the recipients of the genetic counseling? 3) What
should the content of genetic counseling be? 4) How should we perform culturally
competent genetic counseling? In addition, they show that religious students have less
positive attitudes towards genetic testing than secular ones. Moreover, those of the
religious students who do not study life sciences were less in favor of knowing about
8
their genetic situation, suggesting that studying life sciences and developing a
scientific approach moderates the cultural differences that exist between the religious
and non-religious students. In examining the students' moral reasoning, I found that
their religious belief was the most influential of the factors I assessed. The findings
from my close examination of the National Religious showed that they were largely
exposed to and influenced by Western attitudes to genetic testing, i.e. attitudes that
resemble the Western, secular society in which they are fully integrated. Altogether,
the results of the study as a whole, from the interviews with the experts to the in-depth
analysis of individual students, support the conclusion that culturally competent
genetic counseling is essential for informed decision making.
All four chapters raise the need to place the individual in the center of the counseling
process, suggesting that culturally competent genetic counseling should address not
only the general religious affiliation but also the specificity of each patient - the
personal features that are reflected through each individual's attitudes, knowledge,
perceptions norms and values. All these influences together add up to a unique
individual, who requires unique genetic counseling particularly adapted to that
individual's needs, while taking into account his participation in the collective
character of a cultural group.
The main contribution of this research is its portrayal of the complexity of culturally
competent genetic counseling. This is demonstrated via the "Triple C model",
constructed in the final chapter of the study, which illustrates the highly personal
elements involved in genetic counseling, showing how the procedure is influenced by
individuals' culture, shaped by their norms, values, genetic knowledge and
perceptions.
Key words: cultural competence; genetic counseling and testing; mixed- method
approach; religious affiliation; norms; values; genetic perceptions and attitudes; moral
reasoning.
9
Author's note
I have chosen to investigate the topic of culturally competent genetic counseling since
it is a subject to which I have been exposed for many years. My Master’s thesis was in
the field of human genetics of Thalassemia, encountering the different mutations
found in the multicultural Israeli population, as well as the impact that informed
decision making can have on well-being of the families. Later, while working as a
high school biology teacher, with genetics as my major sub-specialization, I realized
that there are many misunderstandings related to genetics among my students. These
misunderstandings often concerned the need for genetic testing, and above all were
connected to the attitude of the Jewish Halacha towards genetic testing.
I belong to the National Religious sector of the population and so do my students, so
the Halacha’s impact on our lives is very dominant. I heard sentences such as: "why
should I perform genetic tests? There is nothing to do with the results anyway." Or:
"The Halacha doesn't allow us to perform pregnancy terminations in any situation." I
thought how these alternative conceptions might change if the people I encountered
had access to culturally competent genetic counseling, which could help them make
informed decisions based on a more accurate perception of their options.
I felt that I have a mission to look into this topic and find out if these alternative
conceptions are typical to the religious society as a whole. For that purpose I first
needed to investigate what characterizes culturally competent genetic counseling as
experts in genetics see it. Then I could inquire the attitudes of Israeli students,
including religious and non-religious, towards genetic testing and to genetic
counseling. Are the attitudes in different sectors of the Israeli society influenced by
different degrees of genetic knowledge? In order to understand these attitudes better, I
also examined the moral considerations and the decision making considerations of the
students regarding genetic testing and genetic counseling, and further asked if they
were the same also among the non-religious.
All these and more were questions that I felt I should investigate so that in the next
stage I could try to find ways of improving the genetic literacy of the population,
especially the National Religious sector, in the hopes that such improvements would
increase the chance that the public’s decisions about whether to perform genetic
testing would be informed ones.
10
General preface explaining the entire field and the structure of the thesis
Introduction
The central aim of my research was to examine and analyze the components of
culturally sensitive genetic counseling in a multicultural society. I began this study by
examining the perceptions of genetic experts towards the complex issue of culturally
competent genetic counseling. The issues they raised led me to the main part of the
research, which concentrated on the attitudes, moral considerations and decision
making of Israeli students and focused especially on the National Religious students.
My aim was to capture the differences in these aspects between the religious and
secular students, between those who study different disciplines and between genders.
Ultimately, I sought to understand how various factors in people's background – like
their knowledge, their values and their norms – influence their understanding of and
their willingness to accept genetic counseling.
Research questions
The primary purpose of this study was to investigate and characterize Israeli
undergraduate students' attitudes, moral reasoning and decision making considerations
towards genetic testing and genetic dilemmas. In order to do that I first examined the
insights of Israeli geneticists on culturally competent genetic counseling. Practically, I
hope to make recommendations for culturally competent genetic counseling as a
major product of this research.
The questions that guided this research were:
1. What characterizes culturally competent genetic counseling in a multicultural
society as perceived by experts in genetics during their counseling
experiences?
2. What are the attitudes of Israeli undergraduate students being part of a
multicultural society towards genetic testing and to genetic counseling?
3. What are the moral considerations of undergraduate Israeli students who are
part of a multicultural society regarding genetic testing and genetic counseling?
4. Case study of the National Religious students (who are part of a multicultural
society): what sorts of factors influence their considerations and decision
making on matters of genetic testing and to genetic counseling?
11
Literature review
Genetic counseling in Israel
The Organization of Genetic Counselors in Israel offers the following extended
definition of genetic counseling, citing it as "an interpersonal process in which
information is offered on issues connected to human genetic diseases and their nature,
inheritance, implications, and recurrence in a family at risk, after the counselor has
investigated the family issue and ascertained the mode of inheritance and the chances
of passing it on to future generations." This counseling is referred to as 'non-directed',
because its purpose is "to help those counseled in making medical decisions in a nondirected manner [that is] appropriate to their values."
Israel is a highly varied multicultural society, and approaches to genetic testing and
genetic counseling can therefore differ strongly among the different subcultures.
Differences in religious belief and custom are reflected in differing genetic practices
in Israel. For example, the rejection of pregnancy termination by many religious
communities often prevents participation in genetic testing (Rosner , Rosner, & OrrUrtreger, 2009). In Ultra-Orthodox Jewish society, women refrain from doing
amniocentesis because of religious restrictions that forbid selective abortion, whereas
in secular Jewish Israeli society prenatal diagnosis and selective abortion are
supported, independently of the rabbinical stance (Raz, 2004).
The last part of this study focusses on the National-Religious sector. This sector
shares some (chiefly religious) characteristics with the Ultra-Orthodox sector, but also
has others in common with the secular sector (Frumkin et al., 2011). This religious
and cultural particularity is reflected in the National-Religious sector's genetic
practices. For example, it shows a higher percentage of performing genetic tests than
the Ultra-Orthodox sector, though still lower than that of the secular sector (Sher et.
al., 2003).
Culturally competent genetic counseling
Genetic counseling which is specific to a certain patient according to his or her
cultural background is referred to as “culturally competent” genetic counseling. This
kind of counseling in health care involves understanding the importance of social and
cultural influences on patients’ health-related beliefs and behaviors, and considering
12
how these factors interact at multiple levels of health care delivery (Betancourt et al.,
2003). The need for cultural competence in the domain of genetic counseling has
grown, as the populations in countries - including Australia, USA and Europe - have
become more culturally diverse (Khan et al., 2010). Research has found that increased
awareness of genetic counseling is extremely important, but awareness alone will not
ensure access to those services (Barlow-Stewart et al., 2006). Cultural competence in
genetic counseling is achieved when the patients are not focused on as an “other,” in
the sense of their difference from the dominant culture (Barlow-Stewart et al., 2006).
The counselor has a duty to be familiar with the cultural expectations of the
counselees, including the religious restriction to which they may be committed
(Barlow-Stewart et al., 2006). The intention is that the staff's ability to identify with
and understanding their patients can yield counseling that is more competent and thus
more effective.
Attitudes to genetic testing and to genetic counseling
Competent counseling will be of limited success if the attitudes of the counselees are
not positive enough to ensure that they receive the counseling and are willing to use it
for their benefit. Previous research has shown that positive attitudes towards genetic
testing (Pivetti & Melotti, 2013) are predictors of the intention to undergo genetic
testing and genetic counseling. Our working definition for the term "attitudes" is: a
person's general feeling of `favorableness' or `unfavorable-ness' towards a given
concept (Ajzen & Fishbein, 1980), in this case towards genetic concepts. Our interest,
then, is in the feelings, beliefs and values held by counselees about genetics or about a
genetics-related situation. Since genetic counseling is involved in helping individuals
through the process of informed decision making, it also involves their attitudes to
accepting genetic counseling and genetic testing.
Moral considerations regarding genetic testing and genetic counseling
In addition to attitudes, peoples' values influence their decision making. Moral
reasoning is a procedure in which one decides what one ought (morally) to do on the
basis of one's values. People tend to rely on moral factors when making decisions on
socio-scientific issues (Bell & Lederman, 2003), which means that socio-scientific
issues are linked to moral reasoning. Values are known as one of the components that
influence the making of choices between alternative courses of action (Dietz et al.,
13
2005; Kortenkamp & Moore, 2001; Oreg & Katz-Gerro, 2006; Stern et al., 1999;
Stern, 2000). For the purpose of our study, values are defined as: the principles people
use to select and justify their actions and to evaluate people and events. The value
priorities of individuals are affected by their social experiences, such as religion,
gender, education, occupation, and cultural background (Schwartz, 1992). When
dealing with the moral reasoning of individuals on genetic health issues, and with the
values reflected therein, we must be aware of the norms and values at risk in
controversial issues such as prenatal diagnostics and pre-symptomatic genetic testing,
which confront people with difficult choices (Van der Zande et al., 2009).
Decision making
Throughout our life, we are required to make decisions on a wide range of topics,
including genetic testing. We are usually not taught to make these decisions, and most
are therefore intuitive, influenced chiefly by our own values (Saaty, 2000). Making
decisions in an informed manner is one of the goals of societies, especially in
educational systems (Pigozzi, 2006; Raelin, 2006). If the public is to make informed
choices about scientific issues, the public’s understanding of science must be
promoted and enhanced. It has been argued that more knowledge will lead to more
informed choices. The axiom of PUS (public understanding of science) is: “the more
you know, the more you love it”, which also suggests that lack of knowledge is
sometimes the driver of negative attitudes and biased risk perceptions (Bauer et al.,
2007). Sometimes lack of knowledge is even associated with more discriminating
attitudes towards science (Evans & Durant, 2000; Durant & Legge, 2006).
Researchers have realized that the participation of the public in scientific decisions is
crucial, since the public no longer trusts scientists blindly, and areas such as genomics
and modified food are giving rise to many ethical and social dilemmas in which the
scientists are trying to involve the public (Wilsdon & Willis ,2004). Thus, as the
public gradually becomes more involved, their decision making will also become
more informed.
Informed decisions are decisions that are “based on relevant information, consistent
with the decision maker's values and behaviorally implemented” [Marteau, Dormandy
& Michie (2001) p. 99). This means that cultural factors have great influence in the
decision making process, especially regarding genetic testing (Awwad, McCarthy,
Bartels & LeRoy 2008; Sterling, Henderson & Corbie-Smith 2006). Knowledge is
14
therefore not the only vital factor in making informed decisions, but also the cultural
background that inspires individuals’ values and attitudes.
Decision making in the field of genetic testing and genetic counseling
The complexity mentioned above regarding genetic testing adds to a set of factors that
previous research has found to influence decision making in the field of genetic
testing and genetic counseling. One of the more dominant of these is the explicit
genetic knowledge that the counselee had previously acquired (Chen & Goodson,
2007; Frets et al., 1990; Vos et al., 2012; Wilson, Ferguson & Thorn, 2011), as well
as the procedural knowledge of the counseling process (Biesecker & Peters, 2001).
These aspects also include knowledge of the statistical facts associated with the
perceived risk for genetic diseases (Schwartz et al., 2000), and the reliability of the
information given to the counselee (Skirton, 2001), since some genetic tests give
uncertain test results.
Aside from knowledge, another central factor that influences decision making is the
counselees’ attitudes and perceptions towards complex genetic testing - how the need
for genetic testing fits into their world view. The relevance and authenticity of the
genetic knowledge or the genetic situation to the counselee's life is influential too
(Vos et al., 2012). This factor includes the counselee's attitude towards the
consequences of getting results of genetic testing (Morren et al., 2007).
Religion and ethnicity have also been shown to contribute to this domain of decision
making. There is a connection between people’s spirituality and their likelihood of
receiving test results, and between their level of religiosity and the way they perceive
genetic testing (Botoseneanu, Alexander & Banaszak-Holl, 2011; Schwartz et. al.,
2000).
This decision making is also influenced by personal factors, like the client's
willingness to undertake risk assessment and personal risk (Frets et al., 1990; Geer et
al., 2001) and their family structure (e.g. if the couple has children and/or wants
children) (Caruso et al., 2011; Chen & Goodson, 2007; Frets et al., 1990; Wilson et
al., 2011). Personal reasons also encompass practical concerns, like the cost of the
tests (Geer et al., 2001; Chen & Goodson, 2007), time commitment to the procedure,
the privacy of genetic information (Geer et al., 2001) and access to genetic
15
counseling. Addressing such personal factors includes meeting the client's needs and
expectations from the genetic counseling process, including their requests for help or
information (Biesecker & Peters, 2001).
Overview of the chapters and how they integrate in the
general domain of research
The four chapters included in this research are part of the general domain of genetic
counseling. They all address the general question of advancing and analyzing the
components of culturally sensitive genetic counseling in a multicultural society. Each
one of the chapters addresses this challenge from a different direction, adding up to a
whole that intends to provide a complete picture with concrete proposals for
application and advancement of the field of genetic counseling. Overall, the research
approaches this field from the perspectives of attitudes, moral considerations and
decision making, while consistently maintaining a cultural one point of view, since
the focus is on the multicultural nature of Israeli society.
The order of the chapters, their relationship and how they form
a continuous and logical structure
This research is constructed, as mentioned above, of four chapters. The chapters are
attached according to the order of the research. I began the research with the
interviews of the genetic experts (the first chapter), whose insights regarding
culturally competent genetic counseling provided me with guidance throughout the
rest of the research. During the interviews, the experts brought up relevant cultural
barriers to genetic counseling that are part of the Israel's multicultural society. They
mentioned differences in attitudes towards genetic testing that characterize some
sectors of society, brought up norms and values that distinguish different sectors in
society from one another and addressed cultural aspects that influence decision
making relating to genetic counseling. All these aspects provided fertile ground on
which to construct a study that examines their presence and influence in a given
population, so as to get a more complete understanding of Israeli society's position in
relation to genetic testing and counseling.
16
This study followed a group of undergraduate students, moving from a general
perspective to a more specific and personal one. I began the research with a
quantitative questionnaire (the second chapter) that concentrates on the attitudes of
the students towards genetics and genetic dilemmas. In this part of the research I
compared the attitudes of different students towards genetic testing and procedures
based on three different parameters - comparing and contrasting between religious
and secular students, students who study life sciences and those who do not, and
women/ men. My results showed remarkable differences between the attitudes of the
different groups, but still did not fully characterize the groups being tested, since the
personal position of each student was not manifested through this questionnaire. The
personal words of the students, reflecting their moral considerations regarding genetic
testing, which can be elicited through qualitative research, were still missing.
For that reason I continued with an open ended qualitative questionnaire (the third
chapter) dealing with genetic dilemmas. Through that questionnaire I aimed to hear
the voice of the students and to understand the moral considerations they employ
when addressing genetic issues. Once again I compared the moral considerations of
religious and secular students, those who study life sciences and those who do not and
women versus men. My results showed that religion is the most influential factor on
the moral considerations of the students.
Field of study and gender were less
influential. I therefore decided to focus on the religious students in order to deepen
my understanding of this sector, which was shown by the two questionnaires, and by
the experts, to be unique in its approach to genetic testing. Since the religious students
who participated in my questionnaires were members of the National Religious sector,
they were the participants in the last part of my research.
In this last part, I interviewed the National Religious students participating in my
study so as to fully understand their decision making considerations regarding genetic
testing and counseling (the fourth chapter). These interviews enabled me to look
extensively and intensively at each specific person, to listen to all of the students'
individual decision making considerations and then compare and contrast recurring
considerations raised within this unique sector. My findings showed several recurring
types amongst the religious interviewees, which represent different ways of dealing
with genetic dilemmas and genetic decision making, based on one's knowledge and
perceptions, values and norms.
17
The findings of this fourth part of the research enabled me to construct the 'Triple C
model', which is described in detail in the fourth chapter but actually incorporates the
conclusions of the research as a whole. The model (which shall be described more
fully in the 'research significance' section) can be used to identify and analyze
decision making considerations in the genetic counseling domain, noting how they are
influenced by the individual's knowledge and perceptions, values and norms in order
to better address counselees at a genetic counseling session.
Figure 1: The Triple C Model: Culture influences Choices towards genetic
Counseling.
Methodology
Research method
This study was carried out using the mixed methods design, a research method that
allows for the use of both quantitative and qualitative research tools, and thus answers
questions that would not be answerable using only one method (Creswell & Plano
Clark, 2011; Johnson & Onwuegbuzie, 2004). The research consists of a 'zoom-in and
zoom-out' working method. The interviews with the genetic experts (answering the
first research question) 'zoomed in' on a specific population of experts. These experts
raised the topics of interest, which enabled us to 'zoom out' for a wider view of the
undergraduate Israeli population and answer the 2nd research question. This was done
by means of quantitative methods, which are useful when the variables are known (in
our case religion, field of study and gender) and the goal of the researcher is to
determine the connection between them (Carey, 1993).
18
Following this 'zoom out,' I zoomed back in to conduct content analysis of the
student's explanations in order to understand the students' moral considerations (3rd
research question). Then I zoomed in further to look at a specific portion of the
student population, the National-Religious students, thus answering the fourth
research question.
As this description indicates, a considerable portion of the research is qualitative
research, which by definition deals with the study of human behavior and the attempt
to understand it (Miles & Huberman, 1994). The qualitative part includes the openended elements of the questionnaire (chapter 3), the interviews with the genetic
experts (chapter 1) and the interviews with the National-Religious students (chapter
4). These qualitative elements aided us in capturing moral values more clearly,
especially in chapter 3 (Flick, 2009), and in perceiving the complexities and processes
underlying human actions and decisions, especially in chapter 1 and 4 (Beeson, 1997).
Research participants
In this study, we distributed questionnaires to a large sampling of undergraduate
students. Our purpose was to find the connection between field of study, religious
affiliation, and gender on the one hand, and the affective components of genetic
literacy on the other. We focused specifically on undergraduate students because they
are at the relevant age for genetic counseling concerning birth defects and genetic
diseases. In Israel, nearly 72% of the undergraduate students are aged 22-29, and
71% of men and 93% of women marry during these years. In addition, 71% of the
women in Israel have their first child at the age of 20-29, with an average age of 27.41
(CBS, Statistical Abstract of Israel, 2013). The implication of this data is that these
students will most likely get married and have their first child during their academic
studies, and will hopefully have genetic counseling during those years (statistics of
couples undergoing genetic counseling in Israel are unpublished). Therefore, the age
of undergraduate students is the most relevant in which to analyze their genetic
preferences.
The research population of the first chapter included 15 geneticists and genetic
counselors from 9 medical centers and health maintenance organizations (HMOs)
throughout Israel (a list of participants is attached in the first chapter). The research
19
population of the second and third chapters was 490 and 449 Israeli undergraduates
respectively, 73% of whom study in universities and the rest in colleges, while 57% of
the students were female, 51% identified themselves as religious or semi-religious and
the rest were secular. Of the students, 54% studied life sciences and the rest studied
subjects with no connection to genetics, such as economics, education or computer
engineering.
The research population of the fourth chapter included 51 undergraduate students who
belong to the National-Religious sector in Israel. The participants in this study came
from 3 universities (78% of the students) and 3 colleges throughout Israel. Of these
students, 43% study life sciences and the rest study other subjects such as sociology,
physics, economics etc. Of the interviewees, 49% are women and 39% are married.
The age range of the interviewees is 20-29, with an average age of 23.9. Moreover,
57% of them live in large cities, 22% in medium sized cities and the rest in small
villages or other rural localities.
Data collection
The data in this research was collected by questionnaires and by interviews:
Questionnaires
I constructed two questionnaires specifically for this research. A quantitative
questionnaire (described in detail in the second chapter) and a qualitative
questionnaire (described in detail in the third chapter). The construction of the
questionnaires was based on the literature review and the in-depth interviews with the
genetics experts (first chapter). These resources raised issues such as: alternative
conceptions concerning genetic testing and genetic counseling amongst the lay public,
the layperson’s difficulty in making informed choices on medical genetic issues,
typical cases being dealt with in genetic counseling sessions, barriers to obtaining
genetic information faced by different sectors of society, and cultural influences on
ethical considerations concerning genetic testing and genetic diseases. These issues
constitute the basis for both questionnaires, and the independent variables, which the
experts and the literature review noted as the most influential on the public’s attitudes,
values and decision making in the domain of genetic counseling and testing.
20
Data analysis, validity and reliability of the second chapter questionnaire
To validate the questionnaire, it was examined by three genetics experts and an expert
in science education. This validation assessed the suitability of the questions to the
study’s goals, the relevance of the questionnaire to the research questions and the
questions’ phrasing. As Glynn, Taasoobshirazi and Brickman (2009) suggest, we
promoted candid responses by assuring the students that their identities would remain
confidential, after explaining that their responses will help science education
researchers to better understand and improve genetic counseling.
To assure reliability of the questionnaire’s quantitative part, the Likert type statements
were analyzed by their Cronbach's alpha value (Peterson & Kim, 2013). The internal
reliability of Section B showed an overall Cronbach’s alpha value of 0.79. Removal of
any of the 15 items in the section had the effect of weakening internal reliability. Part
1 showed a Cronbach’s alpha value of 0.72 and parts 2 and 3 each showed a value of
0.7.
The Interviews
The use of individual interviews with 15 experts in genetics in the first chapter and 51
students in the fourth one provided me with an opportunity for a detailed investigation
of the personal perspectives and context (Lewis & McNaughton Nicholls, 2013;
Patton, 2005; Ritchie, 2003). I used a standardized open-ended interview because I
wanted to minimize the variation between the different interviewees (Patton, 2005).
The construction of the interviews was based on a review of the literature on decision
making in relation to genetic counseling over the last 15 years. This review raised
four main factors that are deemed most influential in the decision making process for
the field of genetic testing and genetic counseling: genetic knowledge, attitudes and
perceptions, religion and ethnicity and the personal factor (including the emotional
factor). In light of these factors, I constructed the interviews so as to address these
main subjects and their subtopics, so that the questions relate to one or more aspects
of these 4 main concepts. Since the interview is open ended, the students and experts
can raise a wide range of categories for each question to reflect their personal, cultural
point of view, sometimes far beyond the topics that the question had been designed to
address.
21
Chapter 1
A Qualitative Look into Geneticists' Insights Regarding Culturally Competent
Genetic Counseling and Recommendations for its Enhancement
Abstract1
The aim of this study is to describe the perceptions and recommendations of Israeli
genetic experts regarding culturally competent genetic counseling. Qualitative data
was collected from 15 semi-structured interviews with Israeli genetics experts.
Recurring themes were identified using 'thematic analysis' and coded by means of
'grounded theory'. Our analysis divides the data from the experts' interviews into four
main themes: Why is culturally competent genetic counseling important? (Describing
its contribution to individuals and to society); who is the recipient of culturally
competent genetic counseling? (Differentiating the needs of counselees based on
genetic education, cultural/religious characteristics and geographic location); what
should we include in culturally competent genetic counseling? (Addressing the
contents that counseling should convey); how should we perform culturally competent
genetic counseling? (Addressing the methods that counseling should employ). In
light of the study, we recommend lengthening the genetic counseling session so that
counselors will be able to truly gauge all the prior knowledge of the counselees, their
religious beliefs, norms, values and attitudes towards genetic testing. We further
recommend that students continue to study genetics further into high school. Finally,
we suggest adding a preparation session, similar to a prenatal course, to the genetic
counseling of lay people so that their genetic knowledge, attitudes and perceptions
will be enhanced, leading to more efficient genetic counseling and more informed
decisions.
Key words: cultural competence; genetic counseling; genetic experts; qualitative
analysis; semi-structured interview
1
Siani, M., & Assaraf, O. B. Z (2016). A qualitative look into geneticists' insights regarding culturally
competent genetic counseling and recommendations for its enhancement. Journal of Genetic
Counseling. Under review.
22
Introduction
Reproductive genetic counseling is a process that is affected by the counselee's values
and culture. In this process the counselor promotes decision making through
discussion of the client's values and beliefs, incorporating how the client or couple
personalizes the genetic information passed to them during the counseling session so
that this scientific information is both useful and meaningful to them (Biesecker &
Hamby, 2000).
Thus, the aims of the genetic counseling are: 1. to deliver
personalized genetic information to the client in a useful way. 2. To explore the
meaning of the information with the client in light of personal values and beliefs. 3.
To promote the client’s preferences for reproductive options, considering the various
alternatives, consequences and barriers. 4. To prepare the client for accepting the
outcome of the choice(s) (Biesecker, 2001). Thus, counseling must be conducted in a
manner that is cognizant and respectful of the cultural differences that may exist
between various counselees, and between counselees and their genetic counselors
(Abad et al., 2014; Weil & Mittman, 1993).
Despite these aims, it has been found that lay people often have alternative
perceptions regarding genetics (Condit, 2010; Falcone et al., 2011; Klitzman, 2010;
Michie, Lester, Pinto & Marteau, 2005) and that as a result their decision making
following the counseling process is not always informed, often relying on prejudice
and on information with no scientific basis. These alternative perceptions and the
cultural differences that at times accompany uninformed decision making have
recently led researchers to open a discussion about cultural competence in genetic
counseling. This implies that there is a growing understanding of the importance of
providing unique culturally sensitive genomic care to individuals from any culture,
race, or ethnicity (Barlow-Stewart et al., 2006; Berry, 2013; Khan, Benson, MacLeod
& Kingston, 2010; Middleton, Robson, Burnell & Ahmed, 2007; Paniagua & Taylor,
2008). The ultimate aim is to make genetic counseling accessible to all populations,
bridging multicultural gaps for the sake of universally available, informed decision
making based on counseling that has been customized to the counselee's particular
needs.
The main objective of this study is to shed light on the complex considerations
undertaken by experts in genetics and genetic counselors when they carry out
counseling and when they meet with counselees. Our emphasis is on the insights of
23
the counselors regarding the principles of culturally competent genetic counseling,
and their thoughts regarding the manner in which this counseling can be done. The
experts' interview (attached in Appendix 2) intentionally does not mention the term
'culture,' so as not to direct the interviewees to a specific answer. Nevertheless, this
was a topic that arose as a dominant thread in all the interviews. Based on this
research, we aim to offer guidelines that may aid genetic counselors in providing
culturally competent genetic counseling. Our research questions are therefore:
1. Why is culturally competent genetic counseling important?
2. Who is the recipient of this culturally competent genetic counseling?
3. What should we include in culturally competent genetic counseling?
4. How should we perform culturally competent genetic counseling?
Theoretical background
Genetics and genetic counseling in the western world and in Israel
"Genetic counseling is an interpersonal process in which information is offered on
issues connected to human genetic diseases and their nature, inheritance, implications,
and recurrence in a family at risk. The process is intended to help those counseled in
making medical decisions in a non-directed manner, appropriate to their values, and is
therefore called non-directed counseling” (Organization of Genetic Counselors in
Israel, 2015). While providing genetic information to the Israeli public, genetic
counselors throughout the country do already strive to pay attention to the cultural
differences of the different sectors of the Israeli multicultural society. Nevertheless,
we aim to introduce a more culturally competent type of genetic counseling,
customized to the values, norms and attitudes of the counselees, to ensure that their
choices in these matters will be as informed as possible.
What is culturally competent genetic counseling?
“Cultural competence” in health care involves "understanding the importance of
social and cultural influences on patients’ health beliefs and behaviors; considering
how these factors interact at multiple levels of the health care delivery system (e.g., at
the level of structural processes of care or clinical decision-making); and, finally,
devising interventions that take these issues into account to assure quality health care
delivery to diverse patient populations" (Betancourt, Green, Carrillo, & Ananeh24
Firempong, 2003, pp. 297). The need for cultural competence in the domain of
genetic counseling has grown, as the populations in countries - including Australia,
USA and Europe - have become more culturally diverse. For example, family
orientated genetic services for ethnic groups practicing consanguinity can be
acceptable and effective when provided in a culturally appropriate manner (Khan et
al., 2010). Research has found that increased awareness of genetic counseling is
extremely important, but awareness alone will not ensure access to such services
(Barlow-Stewart et al., 2006). Cultural competence in genetic counseling is achieved
when the patients are not focused on as an “other,” in the sense of their difference
from the dominant culture (Barlow-Stewart et al., 2006). The counselor has a duty to
be familiar with the cultural expectations of the counselees, including the religious
considerations to which the counselees may be committed. Additionally, cultural
competence can be achieved if conscious attempts are made to bridge cultural gaps
between the patients and the staff (Barlow-Stewart et al., 2006). The staff's ability to
identify and with and have an in-depth understanding of their patients can lend
cultural competence to their counseling.
Why is culturally competent genetic counseling important?
Research has shown that comprehension of scientific and genetic information is
influenced both by cultural influences (Lee et al., 2005) and by genetic knowledge
and perceptions (Al-Gazali, 2005; Lanie et al., 2004; Shaw & Hurst, 2008). The
influence of culture on scientific learning has shown that only when the student's
culture was taken into consideration was there significant learning and higher
achievement (Lee et al., 2005).
It has been shown that religious beliefs, being part of cultural background, affect one's
approach to science in general and to genetics in particular (Siani & Assaraf, 2015b).
Since there is an element of tension between science and religion, it is necessary to
integrate religious beliefs into the understanding of science (Starr, 2009). For
example, Pakistanis and other subjects deriving from South Asia and living in Great
Britain have been shown to believe that a Higher Power causes congenital problems
or the loss of a pregnancy (as do many other religious believers from various cultural
backgrounds) (Shaw & Hurst, 2008). Regardless of the type of education received,
most of these subjects believed that only God knows why a given situation occurs,
25
and therefore may not wish to intervene before or during a pregnancy, since they
believe the situation is not in their control anyway.
Beliefs of this kind can serve as a basis for alternative concepts of genetic ideas,
which raises the need for culturally competent counseling that is able to adapt to the
counselee's genetic knowledge and their alternative concepts. For example, many
people do not understand the concepts used in the field of genetics, the significance of
the results of genetic testing, or the means by which genetic diseases are inherited
(Condit, 2010; Falcone et al., 2011; Klitzman, 2010; Michi et al., 2005). Factors like
religion, educational level and general knowledge affect people's genetic and
scientific knowledge, and the prevalence of common alternate conceptions (Shaw &
Hurst, 2008; Lanie et al., 2004; Al-Gazali, 2005; Bauer et al., 1994).
Who needs culturally competent genetic counseling?
The need for culturally competent genetic counseling is not limited to a specific
population, since the influence of religious beliefs on scientific and genetic
conceptions has been found to exist in all investigated societies. In each of the
societies that have been studied (Aqueel, 2007; Ota Wang, 2001; Shaw & Hurst,
2008), religious or traditional beliefs have been found to contradict, at times, genetic
recommendations. While some subjects did use genetic terminology, others
assimilated the genetic information in a manner that contradicts genetic theory
because of their religious beliefs. An understanding of the differences between
various religions and the beliefs associated with them will help us understand the
manner in which individuals relate to the tension between faith and science
(Dickerson et al., 2008).
The acceptance of scientific (Bauer et al., 1994) and genetic information (Siani &
Assaraf, 2015a) is influenced not just by religion and beliefs, but also by interests and
attitudes towards science and genetics. Populations with less interest in genetics and
less willingness to assimilate and accept new genetic information make it necessary to
address them in a competent way, taking into consideration their particular fears, the
barriers to their acceptance of genetic information and their desire to maintain their
individual rights (Siani & Ben-Zvi, 2016).
The age of the public's exposure to prenatal genetic counseling is also critical to its
success. Premature exposure, at a time when one is not ready to hear about these
26
topics, is liable to undermine future success. One of the factors that can aid in
acceptance of knowledge is the level of genetic knowledge of the counselee, which
tends to be inversely proportional to age, and is highest at the age of 18-25 (Ashida et
al., 2010). These findings should be taken into account when planning culturally
adapted genetic counseling to increase its chances of success.
How can culturally competent genetic counseling be enhanced?
One of the fundamental requirements for addressing the counselee in a culturally
competent way is that the counselors have knowledge of the basic ethno-cultural
values of patients and their families. This can guide healthcare providers, like genetic
counselors, in delivering ethno-culturally competent, culturally sensitive genomic
healthcare that meets the needs of a rapidly growing diverse population (Middleton et
al., 2006; Paniagua & Taylor, 2008). Of course genetic counselors do already refer to
the cultural background of the patient, but sometimes culture is not discussed during
the counseling session because the counselors do not realize that the patient’s
responses are reflecting a cultural belief (Berry, 2013). This suggests that the issue of
culture should be spoken about during the session as a rule, to increase the chances of
identifying relevant cultural issues.
Berry's research (2013) has demonstrated that further research is needed to explore
the skills used by genetic counselors in cross cultural genetic counseling sessions, as
well as the clients' perceived comfort and limitations. In addition, further research is
needed to explore the perceptions of clients as to whether their cultural needs are
being met within the context of genetic counseling sessions. Sometimes these are not
met because of cultural gaps between the counselor and the counselee (Cura, 2015).
Materials and Methods
Research Methodology
This study is based on qualitative data gathered by means of in-depth interviews.
Qualitative methods are used to address research questions that require researchers to
explain or understand social phenomena and their contexts, and to identify the
important influences of these contexts (Ritchie & Ornston, 2013). They are suited to
exploring issues that hold some complexity and to studying a process that occurs over
time (Ritchie, 2003). The qualitative methodology used in this research is 'multiple
27
case study', in which several cases are examined to discover the similarities and
differences between them (Baxter & Jack, 2008). Our research aimed to understand
the complex considerations of geneticists and genetic counselors and their insights
regarding principles of culturally adapted genetic counseling. The similarities and
differences between the different interviewees were revealed through in depth
interviews, which allowed the interviewees to raise all the topics they deemed
relevant, to explain their attitudes thoroughly and to give concrete examples from the
genetic clinic.
Participants
Our study population was composed of 15 geneticists and genetic counselors from 9
medical centers and health maintenance organizations (HMOs) throughout Israel (list
of participants is attached in Appendix 1). Our interviewees work at diverse institutes
throughout Israel, since we realized that geographic location plays a role in the
counseling process as well. We appealed to the majority of the genetic counselors and
geneticists in these medical institutions by mail, asking them to be interviewed for our
research. We arranged a meeting with those who were willing to do so. The in-depth
interview (attached in Appendix 2) took approximately an hour and a half.
Data Analysis
The analysis was conducted in stages. First we conducted a “thematic analysis”
(Boyatzis, 1998; Dey, 1999) in order to obtain the main themes that arose from the
answers. The second stage was obtaining the codes from the thematic analysis. This
was done according to the “grounded theory” analysis (Corbin & Strauss, 2008;
Glaser & Strauss, 1967), coding the replies until saturation. The third stage started
with our reflective process. After we conducted a few interviews and came to see
some of the codes differently, and we also realized that some categories should be
added. This resulted in another code refinement for all of the interviews, followed by
a peer and auditor debriefing. Peers that were involved in the research and external
researchers validated the codes (Creswell & Miller, 2000) and based on this validation
process the codes were refined again. In the fourth stage we refined the codes and
produced the final categories. We then proceeded to recode all the interviews
according to the new coding.
28
In accordance with the qualitative grounded theory approach, our goal was to enable
the respondent's voice to be heard (Kvale, 1996) and not to force our pre-existing
categories. After listening to and transcribing the interviews, we conducted a line by
line detailed microanalysis coding process in order to generate initial categories
(Devers & Frankel, 2000). The analysis produced four groups of primary categories,
which together add up to the factors that geneticists in Israel see as influences on the
counseling's cultural competence. The codes were grouped into sub categories, which
were grouped once again into four main categories: " 1.Why is culturally competent
genetic counseling important?" (Figure 1); "Who is the recipient of this culturally
competent genetic counseling?" (Figure 2); "What should we include in culturally
competent genetic counseling?" (Figure 3) and "How should we perform culturally
competent genetic counseling?" (Figure 4).
Figure 1: The 'why is culturally competent genetic counseling important' category
tree.
29
Figure 2: The 'who is the recipient of this culturally competent genetic counseling'
category tree
30
Figure 3: The 'what should we include in culturally competent genetic counseling'
category tree
31
Figure 4: The 'how should we perform culturally competent genetic counseling'
category tree
Validation and reliability
During the data collection we made an effort to maintain analysis reflexivity - to be as
sensitive as possible to the ways in which we collected data and to minimize any bias
due to prior assumptions or experience. As Mays and Pope (2000) advised, personal
and intellectual biases were made plain at the outset of the research report to enhance
the credibility of the findings. Since every researcher interprets the data according to
their own subjective perspective, content validation was done with the aid of a few
experts from different areas of expertise, so as to capture as wide a view as possible
while defining the final codes (Elo & Kyngäs, 2008). These included two specialists
in genetics and in science education and a researcher from the science education field,
all with extensive experience in qualitative analysis. In addition, as Graneheim and
Lundman (2004) have suggested, a dialogue took place between the researchers to
32
agree on how the data should be categorized. This procedure took place twice, in two
rounds, to assure the accuracy of the categorization.
Results
This section is divided according to the four category trees produced by our analysis
of the experts' interviews (Figures 1-4). These summarize the main themes that came
up in the interviews, demonstrating the thoughts, the examples from the clinic, and the
dilemmas raised by the experts. Each of the experts is represented by a letter assigned
by the researcher (see the table in Appendix 1).
1. Why is culturally competent genetic counseling important?
The considerations raised by the interviewees for aiming to perform culturally
competent genetic counseling can be broadly divided into two primary sub-categories
(see figure 1): 'for the benefit of the individual' and 'for the benefit of society'. The
first of these sub-categories reflects the interviewees' understanding that individual
citizens need to be addressed specifically, according to their personal background and
agenda, so that they can make informed decisions about their own welfare:
"When standing before the wedding or before pregnancy, we suggest that people do
genetic testing according to their background and origin and sometimes people do not
choose to do the testing that is right for them. Also when speaking of degenerative
diseases and of aging diseases, people do not always understand the consequences of
these diseases and the use of genetic testing" (A).
The 'for the benefit of the individual' category is further divided into subcategories,
noting the various contributions genetic counseling can make to addressing personal
issues that influence individuals' ability to fully benefit from it. One of these is
'providing necessary knowledge' – meaning both 'authentic knowledge' (up to date
though complex genetic information) and 'relevant knowledge' (information relevant
to the specific patient based on their genetic problem learning ability). For example,
one expert pointed out that:
33
"What tests are done or not done has to be a conscious choice of the specific person
and that conscious choice can be done only by someone who understands - who has
the relevant knowledge" (H).
In other words, culturally competent counseling is necessary because it provides
individuals with the knowledge they need to make informed decisions regarding their
genetic situation.
Another subcategory that addressed the 'benefit of the individual' is 'overcoming the
fear of knowing.' It included examples like:
"If this woman was a carrier of the two mutations, her family members sometimes say
that they do not want to be tested because this information will not add to them, just
make them more anxious" (D).
This passage reveals that some counselees are very anxious about genetic results,
feeling in many situations that it is preferable not to know at all. This feeling is also
connected at times to the background the counselees come from, the principles
accepted in their family and the support they get for their decision to perform or not to
perform a genetic test.
The second main category of considerations in favor of culturally competent genetic
counseling addressed the 'benefit of society' as a whole, rather than just of individuals.
For example, the sub category, 'principles of the medical system' addresses the moral
implications of genetic counseling for the medical community:
"If the couple doesn't fully understand what the risk of continuing a pregnancy with a
given genetic finding is, then ultimately it is the geneticist who decides for them, and
that seems like too much power to me"(F).
"How have we set our boundaries? Why don't we check for everything? Which
diseases do we check for? I mean people should understand the medical system, why
we check what we check" (0).
Another sub category in the 'benefit to society' main category addresses the
importance of 'preventative medicine':
"There's a government program for testing newborns, and that's going pretty well. It's
moving into public awareness; we're working on it all the time and the numbers (of
newborns tested) are going up" (L).
34
"We say 'go tell your family'. If we find a woman who's carrying a gene for breast
cancer, we say 'tell your family before someone else gets sick, and you could have
saved her life if you'd have told.'" (N).
An additional sub category derived from this main category is 'being part of social
decision making', meaning that culturally competent genetic counseling is needed to
help counselees acquire the knowledge they need to be a part of the public discourse
in these issues:
"To acquire basic genetic knowledge is quite a duty so that the person can say: I can
debate about genetic dilemmas at some point" (B).
According to this quote, part of being an involved citizen is being able to debate about
dilemmas that are not part of one's expertise. Some of these are crucial topics to the
health and well-being of every person, including understanding, debating and even
making decisions in the genetic domain.
2. Who is the recipient of this culturally competent genetic counseling?
The interviewees identified several characteristics that should be taken into account
when adapting genetic counseling to particular populations. They mentioned three
major categories that address the issue of who will be the counseling's recipient,
dividing prospective counselees 'according to genetic education', 'according to
cultural/religious characteristics' and 'according to geographic location' (see Figure 2).
The first main category, 'according to genetic education' includes two sub categories
of populations who need culturally competent counseling: healthcare personnel and
citizens. The need of 'healthcare personnel' to receive more knowledge regarding up
to date genetic counseling is clearly addressed in the experts' interviews. For example:
"She had two healthy children and she was pregnant when she came to the doctor,
who told her that she does not have to take genetic tests because she already has two
healthy children. This is a terrible mistake. She gave birth to a child with Fragile X
and for that I say she could have prevented it all. That is the problem if the doctor is
not updated.
Some doctors are very aware but some doctors don't even send to do tests like Tay–
Sachs. That's bad. It can really save families" (I).
35
The second main category addresses the need to acknowledge the diversity potential
counselees, and the potential influence of 'cultural/religious characteristics' on the
counseling situation. This category consists of sub categories that reflect different
sectors of Israel's extremely multicultural population, based on the interviewees'
references to how their distinctiveness can affect the counseling process. For example:
"In the Ultra-Orthodox sector which is a very traditional one, many tests must not be
done since terminating pregnancy is prohibited" (F).
"It seems to me that among the National Religious public there is great importance to
the issue of genetic screening, since they are not aware of it. The last time I saw
children with Tay-Sachs disease was among that community. They are not aware of
doing genetic tests" (I).
"Among the Bedouins, after 120 days it is forbidden to terminate the pregnancy. In
every society there are expectations but this is rare. The great majority [of Bedouins]
do not terminate after 120 days" (J).
These three citations express the differentiation that is very common amongst the
different sub populations, suggesting that if each sector received genetic counseling
with the right approach, their decision making could be informed and based on
genetic facts that take religious limitations into account.
The third major category in this topic is 'geographic location.' It is important to note in
this context that in Israel (as indeed, in many other places), different geographic
locations are dominated by particular populations, with specific cultural, religious and
socioeconomic characteristics. For example, the primary distinction made by our
interviewees is the common Israeli distinction between 'center' and 'periphery.'
'Center' is a term generally applied to Tel Aviv and its suburbs, the population of
which tends to be wealthier, more secular and more educated than that of the rest of
the country, known as the 'periphery.' The implication of this is that the experts'
references to geographic location actually reflect references to the particularities of
particular cultural and socioeconomic groups. Nevertheless, we maintained the
distinction of these references in a separate category because the experts themselves
described these differences in geographic terms, for example:
36
"There are sectors that do a crazy amount of tests. Tel Aviv for example, is an
extreme case. Women want to do all the tests that are possible. This is typical to nonreligious, educated woman. They hear about the tests from their neighbors and come
with genetic data" (M).
"There are the Orthodox religious patients from Netivot (a peripheral town in the
south of Israel) that won't do almost any genetic tests" (H).
Examples like these suggest that the different sectors of the population, coming from
diverse areas in Israel, need different types of cultural competent counseling, since
their awareness of the possibilities and the consequences of genetic testing is not the
same. While the precise geographic distinctions made by our experts in Israel may not
be directly applicable to a broader audience, the general premise that geographic
location should be taken into account as an indicator of cultural, religious and
socioeconomic particularity could certainly be useful in other contexts.
3. What should we include in culturally competent genetic counseling?
The third research question, which addresses the issue of what the content of
culturally competent genetics counseling should be, produced 3 main categories (see
Figure 3): 'what is genetic counseling', 'content knowledge needed for making
informed decisions' and 'developing positive attitudes towards genetics'.
The following citation reveals how important it is to clarify the intentions and aims of
genetic counseling to the lay population in order to overcome objections to receiving
genetic information and to understanding one's genetic situation.
"We had a couple with their first pregnancy, and they were both carriers of
thalassemia. She had amniocentesis, and it turned out that the fetus is sick and they
kept the pregnancy. During the second pregnancy the fetus was tested and found to be
ill again. Then they stopped the pregnancy and the father told me: I'm glad that we
didn't stop the first pregnancy because if we stopped it and now you would have told
me again that I have a sick child, I would have thought that you don't want me to have
children" (J).
This quote indicates that the first stage for an efficient counseling process is instilling
trust in the counselor and in the counseling process. Counselees must therefore
understand what genetic counseling is and what its goals are.
37
The second main category states that there is 'content knowledge needed for making
informed decisions':
"A person must have a body of knowledge in order to make informed decisions for
himself. The difficulty for me as a genetic counselor is to see someone getting making
a very un-informed decision because he doesn't understand the genetic facts" (J).
As part of this main category, the experts made reference to 'the basics of genetics'
that counselees are usually missing, the lack of which is problematic if we want them
to make informed decisions in the genetic domain. As the quote below shows, these
basics include more than just pure genetic knowledge, but also additional types of
relevant knowledge like an understanding of probability.
"For several years I have been trying to bring couples to genetic counseling before
pregnancy, meaning to think that pregnancy is an important step in life and you need
to plan it and design it in terms of health. I do not think that the problem of the
couples is the understanding the genetics itself. The problem is all the statistics; the
subject of probabilities, and the significance of probability. When you talk about a
risk of one in a hundred, that sort of thing is very difficult for people to grasp"(0).
The content knowledge category also includes a sub-category containing the
'knowledge necessary for critical thinking'. This includes the ability to understand the
'limitations of science and of genetics':
"We need to emphasize the fact that with everything we know, we cannot guarantee
that everything will be OK. There may more problems that we have not checked and
therefore it is impossible to be 100% confident that the fetus will be healthy" (H).
Another part of critical thinking is the understanding of the various options for
'handling birth defects':
"I think that genetic counseling should include informing about PGD for example, it
is important especially for religious populations. They should be aware of this genetic
procedure because it opens options, so that they won't say: 'Well if I am a carrier I
will not marry'"(G).
The third main category in this category tree (Figure 3) is 'developing positive
attitudes towards genetics':
38
"I prefer that people won't say- we do not agree at all to pregnancy termination. I
hope that people will develop skills of understanding, being informed, and will
understand that a decision in one place has different implications in another
place."(E)
This main category includes various sub-categories, including the development of
positive attitudes 'towards social and ethical issues' in genetics:
"Genetics cannot be taught without reference to ethical questions. There is no black
and white. I always say that if a child broke his arm and went to an orthopedist;
obviously it needs to be fixed. But if a woman has a risk of having a sick child, there is
no right and wrong. What she thinks needs to be done with this situation is equally
right" (B).
The complexity of genetic decision making is completely different than in other fields
of medicine, which makes the necessity for a good attitude and willingness to receive
the information much more relevant.
Another sub category of this topic is developing positive attitudes 'towards the
potential contribution of genetics':
"There are areas of genetics that have a lot to offer. There are also areas that don't.
In these areas there is also the importance of the environment, and we cannot control
everything"(A).
Genetic knowledge has its limitations, and it is not the only factor that influences our
lives. Nevertheless, it is important not to see these limitations as a reason to write
genetics off completely, but to acknowledge and embrace the essential contribution
that genetics can still have on our lives.
4. How should we perform culturally competent genetic counseling?
The considerations that the experts think we should take into account when
performing counseling can be divided into two main categories (Figure 4): 'using
conventional genetic counseling methods' and 'taking into account factors that
influence the acceptance of genetic counseling '. Together, these two categories and
their sub categories constitute a set of guidelines regarding how counselees should be
addressed so as to tailor the counseling to each individual's specific needs.
39
The recommendation to use 'conventional genetic counseling methods' refers to
methods such as 'non-directive counseling' (i.e. making sure the counseling does not
direct the counselee's decision to any particular decision) and 'relevant counseling'
(i.e. the ability to tailor, translate and communicate complex information in a simple,
relevant way for a broad range of audiences, http://nsgc.org/p/cm/ld/fid=94). The
meaning of the latter is that part of the success of a counseling session rests on
whether the counselor is able to be sensitive enough to transfer only the relevant
information to a specific counselee, which is not necessarily all the genetic
information about their genetic situation:
"You have to be careful when you pass the genetic information not to throw the
knowledge on to the people and let them deal with it" (M).
"I think it's a skill that we shouldn't downplay, because on the one hand we have to
give people the information but on the other hand we cannot give them information
that they cannot handle" (L.).
This category reflects the experts' opinion that if such accepted methods are used
during the counseling session, the counseling is more likely to be culturally
competent.
The other main category, addressing 'factors that influence the acceptance of genetic
counseling' (Figure 4) reflects additional elements that experts see as necessary to
culturally competent counseling: 'barriers to accepting/understanding genetic
counseling' and 'perceptions and values'.
The 'barriers' sub category includes cultural/religious barriers as a central factor:
"Resistance is often on religious grounds.' Everything is from God'. To me the
question is what does it mean everything is from God? If it means 'I accept all that
God says'; that is fine for me. That's one thing. Or does it mean 'leave me alone,' or
'my husband told me'?" (J).
This means that the religious barriers limit counselees' 'freedom' to perform genetic
testing, since they constitute part of their decision making.
The acceptance of genetics is also influenced by 'cognitive barriers' like the
counselee's 'lack of knowledge':
40
"I think that people who know more think more. When your mind has already
acquired knowledge, not just genetics, it is easy for you to acquire more knowledge
more easily" (C).
This suggests that the former scientific, genetic and general knowledge of the
counselee will alter the kind of counseling they require.
The second sub category contains the various 'perceptions and values' that can affect
the counselees' experience of genetic counseling:
"Today we're talking about a more active consultation that will help people organize
the information they receive according to the advantages and disadvantages for them,
according to their values. In that way we can understand what is important to them
and should be careful about it" (E).
This sub category includes, for instance, the counselees' 'perception of the limitations
of scientific knowledge':
"Today when do genome screening we get a lot of information that we do not know
what it means. You should discuss with the counselee the significance of the genetic
test result and the fact that we cannot interpret all the results we get, so that
people will be more aware of the possibilities of what to do with these test results"(I).
The 'perceptions and values' sub category also includes counselees' 'perceptions of
handicapped children in the family':
"If you have a fetus with a very difficult genetic problem, and you say: 'this is what I
received from God, and I will deal with it', it is your right"(K).
"The Ministry of Health has decided that life with CF is severe enough to perform
screening of the population for this disease. But the decision is ultimately the
couple's. Some of the couples want to have the child" (E).
The implication of this sub category is that some counselees may – for whatever
reason – choose to take on the challenge of raising a sick child. Counselees have the
right to make choices based on their own perceptions and values, and counselors must
therefore understand what these are, respect them as legitimate, and take them into
account.
41
Discussion
The goal of this study was to probe the insights of Israeli geneticists regarding
culturally competent genetic counseling. Our study is designed to capture the experts'
complex thoughts, dilemmas and deliberations regarding the counseling process
through in-depth interviews. The interviews managed to capture a complex picture of
different ideas and approaches, while also describing a fairly uniform line regarding
the basic standards of genetic counseling.
One of our main findings in this research is that genetic counselors have a very
complex view of their role during the counseling session. As the interviews show,
geneticists are required to teach their counselees the basic principles of genetics, but
must also be able to mediate between the up to date genetic knowledge and the needs
of each specific counselee, taking into account their former knowledge and
perceptions (Shaw & Hurst, 2008; Lanie et al., 2004; Al-Gazali, 2005; Bauer et al.,
1994). These perceptions are most influenced by the counselees' cultural background,
by their fears and by what they already know. Genetic counselors are taught to
provide counselees with the genetic information available (NSGC- National Society
of Genetic Counseling), but not every counselee is able to fully understand all the
genetic details in in a way that is beneficial to the procedure of decision making
(Ormond et al., 2010). If the counselees' cognitive situation prevents them from
grasping all the information being conveyed to them, they will not use it anyway and
will leave the counseling confused, overloaded by having received too much
information in a very short time (Donley, Hull & Berkman, 2012). Taking all these
considerations into account, we would like to offer a few suggestions, based on the
voice of Israel's genetic counselors, for improving the genetic counseling procedure
while taking into account the complex background of the counselee.
First of all we would like to suggest lengthening the genetic counseling session so
that the counselor will be able to truly gauge all the prior knowledge of the
counselees, their ability to accept new information, and especially their religious
beliefs, norms, values and attitudes towards genetic testing. The current length of
genetic counseling sessions in Israel, in USA and in Canada is usually 30-60 minutes.
In a session of this length the counselors cannot analyze the exact position in which
the counselees stand. They may be able to pass on the information they are supposed
42
to, but they will hardly able to understand the emotional state, the religious
expectations and the sensitivities of the person or couple being counseled.
Our second suggestion is that every high school student should study genetics.
Currently most of the students in Israel study genetics in 9th grade (Israel Ministry of
Education, Life science curriculum for junior high school). Only a small percentage of
the students continue to study genetics in 12th grade. By the time the majority of the
population reaches the time for genetic counseling, they probably will not remember
anything that they may have learned superficially in 9th grade. Moreover, although
most students do have some genetic knowledge, it has mostly been acquired in a
cognitive manner, with no connection to social and cultural context (Tal, Kali, Magid
& Madhok, 2011). Studies conducted among teachers reveal that not all science
teachers even see the need for integrating social and ethical context into science
lessons (Sadler, Amirshokoohi, Kazempour & Allspaw, 2006). The counselors we
interviewed see it as a crucial issue to teach up-to-date genetics, including the basics
of genetics, the goal and principles of genetic counseling, and the use of genetics in
personalized medicine (Frueh & Gurwitz, 2004) and in cancer therapy (Riley et al.,
2012).
Our third suggestion as part of the geneticists' voice is that the lay person needs an
additional preparation session, similar to a prenatal course, before attending genetic
counseling. This preparation will make genetic counseling much more efficient and
increase the counselees' chances of making an informed decision. The preparation can
help by laying out theoretical genetic dilemmas, so that when counselees are
confronted with dilemmas that are relevant to them, it might be easier for them to deal
with them because they would not be confronting them for the first time. It has
recently been suggested that more effort should be put into explaining the benefits,
risks, and limitations of genetic testing, particularly at the social and personal levels,
to ensure informed decision making (Haga et al., 2013). This preparation can also
refresh the genetic terms that are studied at the high school level, since the lay
population is usually largely unfamiliar with them (Lanie et al., 2004). Finally, the
advantage of this 'advance' preparation is that the actual genetic counseling session
will be more personalized, with less need to discuss the basic concepts of genetics.
43
Study limitations
Our interviewees were those who were willing to participate and be interviewed after
we appealed to a large proportion of the genetic counselors and experts in genetics
throughout Israel. They were told that we are researching the work of genetic
counselors and of geneticists. As such, we might assume that only those who are
willing to share their professional work and maybe even their conflicts, were willing
to go ahead and be interviewed. Moreover, this study only reflects information that
the participants were willing to volunteer, so it may conceivably not be reflective of
issues that counselors prefer not to discuss. Our choice of interviewees and the
exclusively voluntary nature of our information might have tilted the results, raising
topics that would not have been raised if we had chosen a different sample, while
overlooking other topics that might have come up.
44
Appendix 1: List of interviewees and their academic position
Researcher
Academic
Symbol
Title
A
Professor
Position
Previously, Director of molecular and cytogenetic laboratory and Chair of Genetics Department,
Hadassah Medical Center, Jerusalem. Currently, Director of Laboratories, Dor -Yesharim.
B
Dr.
Previously, Head of team, writing genetics books for high schools, Department of Science Teaching,
Hebrew University, Jerusalem.
C
Dr.
Head of diagnostic laboratory, Institute of Medical Genetics, Shaarei Tzedek Medical Center,
Jerusalem.
D
Dr.
Assistant director of genetics laboratory, head of genetic counseling, Tel Hashomer Medical Center,
Tel Aviv.
E
Dr.
Head of Thalassemia and Hemoglobinopathies molecular diagnostics laboratory, Dept. of
Hematology, Hadassah Medical Center, Jerusalem.
F
Dr.
Director, prenatal diagnostic and cytogenetics laboratory, Hadassah Medical Center, Jerusalem,
G
M.Sc.
Senior genetic counselor, Rambam Health Care Campus, Haifa.
H
Dr.
Director of Laboratories, Genetics Institute, Soroka Medical Center, Beer Sheva.
I
Dr.
Director of the Institute of Medical Genetics, Wolfson Medical Center, Holon.
J
Dr.
Previously genetic counselor at Soroka Medical Center (Beer Sheva), presently genetic counselor,
Meuchedet Health Group, South-Yehuda Region.
K
Dr.
Previously, team member - writing genetics books for high schools, Department of Science Teaching,
the Hebrew University, Jerusalem
L
M.Sc.
Senior genetic counselor, Rambam Health Care Campus, Haifa. Previously genetic counselor at Emek
Medical Center, Afula.
M
Dr.
Senior genetics counselor, Dept. of Genetics, Hadassah Medical Center, Jerusalem.
N
Dr.
Director of the children's genetics department, Institute of Medical Genetics, Shaarei Tzedek Medical
Center, Jerusalem.
O
Professor
Expert in pediatrics and medical genetics, Director of Department of Community Genetics, Ministry of
Health.
45
Appendix 2: In depth experts' interview
1. Why is it important for the public to understand genetics? In your opinion, to
what extent is this understanding important?
2. What do you think is a significant understanding of genetics among the
public? How is this understanding expressed? In what area?
3. Are there issues in the field of genetic science that are important for the public
to understand but are difficult to grasp? What issues? Can you give examples
from your experience?
4. What characterizes the way different sectors accept genetic knowledge?
5. Do different sectors in the public have more / less resistance to genetic
knowledge? Can you give examples from your experience?
6. Are there any public objections to receiving genetic information? On what
specific issues? Can you give examples from your experience?
7. What characterizes the way different sectors accept genetic testing?
8. Do different sectors in Israeli society have objections to receiving genetic
testing?
9. Is there a resistance to conducting genetic testing in the public you are
working with? Can you give examples from your experience?
10. Researchers around the world are worried about geneticists actually
"deciding" ethical decisions for the public through the recommendations they
give in their consultations. How justified do you think this worry is? Do we
really have to worry?
11. What do you think is the main genetic knowledge and what are the main
genetic principles that a lay person needs to be acquainted with in order to
understand the genetic counseling session and make informed decisions? Can
you give examples from your experience?
12. What in your opinion can be considered a successful genetic counseling
session?
46
Chapter 2
University Students' Attitudes towards Genetic Testing: A Comparative Study
Abstract2
Background: Genetic counseling has become a tool for preventing genetic diseases in
western society. It deals with the risk of genetic diseases in families and finds ways to
prevent future problems. The public’s decision making regarding genetic counseling
is influenced by cognitive, cultural and religious variables.
Aim and objectives: To examine the attitudes of undergraduate Israeli students toward
genetic issues and learn how these are affected by the field they study, their religious
affiliation and their gender.
Methods: We gave 490 students a Likert type quantitative questionnaire consisting of
several genetic cases, and asked the students to express their attitudes towards each
one.
Results and conclusion: Of the three factors we assessed, the most influential is the
students’ religious affiliation. Religious students, especially those who do not study
life sciences (LS), place less trust in genetic tests than secular students (p=0.0001).
Students of LS show more critical thinking towards genetic testing than others
(p=0.0128). Gender was least influential, showing a mixed trend of influence. The
results of this research can serve as a basis for developing culturally sensitive
educational programs in genetics.
Key words: Genetic counseling, attitudes, quantitative assessment, genetic testing,
undergraduate students.
Introduction
Genetic counseling is part of the domain of health, providing citizens with
personalized help regarding their own and their family’s genetic health. It helps lay
people understand complex genetic information, and thus make more informed
personal decisions (NSGC, National Society of Genetic Counselors). The informed
2
Siani, M., & Assaraf, O. B. Z. (2015). University Students' Attitudes towards Genetic Testing: A
Comparative Study. American Journal of Public Health Research, 3(3), 81-90.
47
decisions involving genetic risks that are dealt with in genetic counseling usually
revolve around family planning and reproduction, decisions like whether to take a
chance and bear a child in view of increased genetic risks, whether to use prenatal
diagnosis, whether to continue a pregnancy when test results are positive or
inconclusive, and what protective or preparative measures to take in the event of an
increased risk to the fetus (Shiloh, 1996). Informed decisions are decisions that are
based on relevant information, consistent with the decision makers’ values and
applied in their behavior (Marteau et al., 2001). This means that cultural factors have
great influence in the decision making process, especially regarding genetic testing
(Awwad, McCarthy, Bartels & LeRoy, 2008; Sterling, Henderson & Corbie-Smith,
2006).
With the scientific and the genetic progress of the last three decades, genetic diseases
can now be detected before or during pregnancy, which can drastically reduce the
rates of hereditary diseases, and which makes genetic counseling an essential domain
in every society. And yet, the willingness to receive counseling and genetic testing is
not always common in every society, and is influenced by the individual’s cultural
background (Raz & Atar, 2003; Shaw, 2011; Ten Have, 2001). Because our society is
culturally diverse, genetic counselors are expected to encourage people to make
decisions that reflect their own personal and cultural beliefs, attitudes and values
(NSGC, National Society of Genetic Counselors).
With this goal in mind, our study focuses on the attitudes of culturally diverse
undergraduate Israeli students to genetic tests and to genetic counseling and looks at
how these attitudes are influenced by three key factors – knowledge of genetics,
religious belief and gender. Our working definition for the term attitudes is: a person's
general feeling of `favorableness' or `unfavorable-ness' towards a given concept
(Ajzen & Fishbein, 1980). In this case our focus is on the feelings, beliefs and values
our subjects express about genetics, genetics-related situations, or the impact of
genetics on society.
Understanding the potential impact of such factors is important because this
information can help us understand the process of decision making undergone by
subjects of genetic counseling. Recently it has become clear that the evaluation of
genetic knowledge and attitudes is an essential issue to investigate (Christensen et al.,
48
2010), but research about how different audiences react to and use genomic risk
information is still scarce (Lea, Kaphingst, Bowen, Lipkus, & Hadley, 2010).
Although several studies have been done over the years that evaluate the knowledge
of undergraduate students, Bowling et al., 2008a; Bowling et al., 2008b; Fagen, 2003;
Marbach-Ad & Stavy, 2000; Smith, Wood & Knight, 2008), along with several others
that focus on the responses of students to receiving information about genetic diseases
(Falcone, Wood, Xie, Siderowf & Van Deerlin, 2011; Klitzman, 2010;
Michie,
Lester, Pinto, & Marteau, 2005), little attention has been directed to matching genetic
information to the literacy levels of target audiences. Receiving genetic information
can lead to the enhancement of the students' genetic literacy (McBride, Koehly,
Sanderson & Kaphingst, 2010) defined as ‘sufficient knowledge and appreciation of
genetics principles’) and promote informed decision-making on genetic issues
(Bowling et al., 2008b). Our study’s main objective is to shed light on attitudes
toward genetic issues (with an emphasis on genetic counseling), amongst the adult
population in Israel, which is represented here by undergraduate Israeli students. In
order to reveal the main issues that influence these attitudes, we interviewed genetic
counselors and senior geneticists throughout Israel who raised the problems that they
face when meeting patients for counseling sessions. We interviewed experts from a
variety of sectors working in hospitals and clinics throughout the country, so as to
gain insight into the full range of their experience in different sectors of Israel’s
highly diverse society. These experts are in a position to understand what the lay
public needs in order to deal with the genetic information available today. They spoke
about the lack of genetic knowledge with which they have to deal and the barriers to
accepting genetic information they encounter, especially among religious sectors of
the population. The need for more scientific information (Catz et al., 2005) positive
attitudes towards genetic testing (Pivetti & Melotti, 2013) and religious belief
(Aqueel, 2007; Pivetti & Melotti, 2013; Shaw & Hurst, 2008) have been previously
identified separately as predictors of the intention to undergo genetic testing and
genetic counseling.
Based on this information, we decided to examine the
relationships between knowledge and attitudes, and how they are expressed
differently in people from different religious backgrounds. The attitudes of our study
population are therefore evaluated in correlation to the students' field of study, their
religious affiliation and their gender.
49
Our study focuses specifically on undergraduate students because they are at the
relevant age for genetic counseling concerning birth defects and genetic diseases.
Beyond the fact that the discussion of topics such as newborn screening and prenatal
testing is more appropriate for individuals of childbearing age (Long et al., 2011),
statistics show that in Israel most couples marry during their academic studies
(Central Bureau of Statistics, CBS), and will hopefully have genetic counseling
during those years. The undergraduate students’ age is therefore the most relevant
factor in our analysis of their genetic literacy.
Materials and Methods
Goals and research questions
Our goal was to examine the relationships between undergraduate students' attitudes
regarding genetic dilemmas and their field of study, religious affiliation, and gender,
and thus better understand how these factors impact decision making on genetic
issues. We therefore composed a questionnaire that addresses three common topics in
genetics and genetic testing and asked:
1. What are the attitudes of students towards the early detection of genetic diseases?
2. What are the attitudes of students towards decision making concerning late-onset
diseases?
3. What are the attitudes of students towards examining the fetus for genetic
disorders?
Study design and population
Our study population was composed of undergraduate students from a variety of
higher education institutes throughout Israel. We focused specifically on
undergraduate students because they are at the relevant age for genetic counseling
concerning birth defects and genetic diseases. Our goal in constructing the sample
was to achieve a large enough sample of each of our six basic categories (i.e. religious
students vs. non-religious ones, life-science studiers vs. non-life-science studiers,
male vs. female students) to perform statistical analysis, and for each category to
contain roughly the same amount of students. We therefore appealed by email to
higher education lecturers in all subjects that are studied at universities at the
50
beginning of the 2013 academic year. With those who were willing to allow us to
distribute the questionnaire, we arranged a mutually convenient time during the
semester to come to their class and distribute our questionnaire. The students were
told that the questionnaire was non-mandatory, that their answers were confidential
and that its findings would be used for research purposes only. Completing it took
approximately 30 minutes, and was done during the lesson, with one of the
researchers present to answer questions.
We continued to administer the questionnaire and collect data throughout the 2013
academic year until we achieved a sample that we judged to be sufficiently large and
balanced. The final sample consisted of 490 Israeli undergraduates, 73% of whom
study in universities and the rest in colleges. 57% of the students were female, the rest
male; 51% identified themselves as religious or semi-religious and the rest were
secular. 54% studied life sciences (LS) and the rest studied subjects with no
connection to genetics, such as economics, education or computer engineering.
One important limitation to note in our sample is that it does not include students
from Israel’s non-Jewish population, which includes Christian and Moslem Arabs,
Druze, and Bedouins. Of the students who answered our questionnaire, only 3%
identified themselves as non-Jewish, a percentage far too small to produce accurate
results.
Research tool
Our research tool (Appendix 1) was a Likert-type questionnaire that we developed
specifically for this study based on the literature review and in-depth interviews with
genetics experts, all of whom have doctorates and most of whom are experts in
prenatal genetic counseling at Israel’s main hospitals. These resources raised issues
such as: alternative conceptions concerning genetic tests and genetic diseases amongst
the lay public, the layperson’s difficulty in making informed choices on medical
genetic issues, typical cases being dealt with in genetic counseling sessions, barriers
to obtaining genetic information faced by different sectors of society, and religious
influences on ethical considerations concerning genetic testing and genetic diseases.
The independent variables that the experts noted as the most influential on the
public’s genetic literacy are: former knowledge, religious affiliation and gender, so
these are the variables we adopted for our study.
51
The questionnaire was composed of two sections: Section A, a short knowledge test,
and Section B, which assessed the students' attitudes. Since genetic literacy requires
genetic knowledge [Bowling et al. 2008a; East, Hott, Callanan & Lamb, 2012;
Morren, Rijken, Baanders & Bensing, 2007).
Section A of the questionnaire is a knowledge test, consisting of 6 multiple choice
questions that are part of the tool developed by Bowling et al. (Bowling et al. 2008a).
The questions were chosen from different concepts identified in the Bowling tool as
central to genetic literacy. This part of the questionnaire is only intended to clarify the
difference, if one exists, between the genetic knowledge of students studying and not
studying life sciences.
Section B consists of 3 parts, comprising the main portion of the tool. It includes 15
five-point Likert-type statements with a scale of temporal frequency ranging from 1
(strongly disagree) to 5 (strongly agree), so that a high score indicates more positive
attitudes towards the genetic domain discussed, and a lower score reflects doubt or
lower levels of trust. Part 1 of Section B is based partially on Morren et al. (2007),
parts 2 and 3 made use of ideas from Wert et al. (2003) and the guide written by
Dawson, Carson and Venville (2009).
The full questionnaire is attached in Appendix 1.
Section B, Part 1: The 5 Likert type statements in Part 1 deal with attitudes towards
early detection of genetic diseases. For example:
1. I agree to take DNA tests intended for early detection of diseases, even if there is no
treatment for these diseases yet.
2. I would inform my brothers and sisters of a DNA test result indicating I carry an
inherited disease.
Section B, Part 2: The 3 Likert type statements here deal with attitudes towards
late-onset diseases. Examples:
7. There is no reason to check for the gene for [Huntington’s] disease. If the person
gets sick, they will be diagnosed in due time.
8. It is better that a person does not know whether he has the gene for [Huntington’s]
disease or not.
Section B, Part 3: These 7 Likert type statements deal with attitudes towards
examining the fetus for genetic disorders. Examples:
52
10. There is no reason to examine genes for deafness in the embryonic stage, as this is
an illness people can live with.
11. If the genetic examination discovers that the fetus is deaf, it is better to have an
abortion.
Data analysis, validity and reliability of the questionnaire
To validate the questionnaire, it was examined by three genetics experts and an expert
in science education. This validation assessed the suitability of the questions to the
study’s goals, the relevance of the questionnaire to the research questions and the
questions’ phrasing. As Glynn, Taasoobshirazi and Brickman (2009) suggest, we
promoted candid responses by assuring the students that their identities would remain
confidential, after explaining that their responses will help science education
researchers to better understand and improve genetic counseling.
To assure reliability of the questionnaire’s quantitative part, the Likert type statements
were analyzed by their Cronbach's alpha value (Peterson & Kim, 2013). The internal
reliability of Section B showed an overall Cronbach’s alpha value of 0.79. Removal of
any of the 15 items in the section had the effect of weakening internal reliability. Part
1 showed a Cronbach’s alpha value of 0.72 and parts 2 and 3 each showed a value of
0.7.
Statistical Design
The dependent variables in our analysis were the mean attitudes arising from the 3 parts of
Section B. We performed a two-way ANOVA test to check whether there was a
significant interaction between each two independent factors at a time - gender,
religious affiliation and field of study. Two of the three factors - field of study (LS
students vs non-LS students) and religious affiliation (religious vs secular) were found
to be significant. The gender factor did not contribute to the differences between the
students in parts 1 and 2, though it did contribute to the difference in attitudes towards
fetus examination (part 3). We therefore did a separate analysis for male and female in
part 3 only. Since the interaction factor was significant in most of the ANOVA results,
we conducted a series of t-tests between the 2 levels of each factor to determine the
strength of that interaction.
53
Results
To start our inquiry, it was necessary to evaluate the undergraduates’ genetic
knowledge (Appendix 1, Section A). This was essential because our premise is that
undergraduate students studying life sciences know more about genetics than other
students. This premise proved true, as in all 6 multiple choice questions, those who do
study life sciences showed significantly more knowledge. In 5 of the 6 questions the
significance level was p ≤ 0.001, and in one question it was p < 0.05. Moreover,
among the life science students, gender and religious affiliation did not significantly
influence the students' knowledge.
Section B, which is divided into parts 1, 2 and 3, evaluates the students’ attitudes
and is composed of three parts that make up a total of 15 Likert type statements:
1. Attitudes towards early detection of genetic diseases - (early detection).
2. Attitudes towards late-onset diseases - (late-onset diseases).
3. Attitudes towards examining the fetus for genetic disorders - (fetus examination).
A two-way ANOVA test was conducted to find differences among the students
according to their religious belief and their field of study (Table 1). We checked the F
value for each of the variables (i.e. the three genetic topics) separately, according to
religious belief, field of study and the interaction between them.
F(field of
F -Interaction
studies)
(religion X studies)
16.78***
6.92**
4.31*
2.48a
1.51
1.84
4.09*
15.4***
31.98***
0.14
14.09***
8.53***
9.24**
0.80
15.56***
9.74***
28.64***
0.55
0.04
Overall F
F(religious belief)
Early detection
9.34***
Late-onset diseases
Fetus examination
b
Fetus examination,
Women
Fetus examination,
Men
a: p= 0.061,a borderline value.
b: Including men and women
0.01< *p < 0.05
0.001< **p < 0.01
***p < 0.001
54
Table 1: Two way ANOVA test results.
The overall F was significant for two of the three variables (early detection and fetus
examination). For late-onset diseases the p was a borderline value, but for all three
variables the interaction effect (religion X studies) was significant.
Part 1- Attitudes towards early detection of genetic diseases
The Part 1 statements show a strong interaction (F(1,439)=4.31 (p=0.039)) between
the students’ religious affiliation and their field of study (see Table 1). This is further
illustrated in Figure 1, which shows the mean of the 'attitudes towards early detection
of genetic diseases' for the 4 groups we compared (i.e. (LS students, non-LS students)
X (religious, secular)).
4.5
Attitudes towards early detection of
genetic diseases
Likert Mean Score
4
3.5
3
Religious
2.5
Secular
2
Do not study LS
Study LS
Figure1: Mean of the Part 1 statements dealing with 'attitudes towards early detection of genetic
diseases' for the 4 groups we compared (i.e. (LS students, non-LS students) X (religious, secular)).
The secular students (both LS and non-LS) scored highest, without differing strongly
between them in their overall attitude towards early detection. Among the religious
students, the LS students were very close to the secular students, while the attitudes of
those who did not study LS were less positive. This was evident in the T-test results,
which showed a significant difference amongst religious students between those who
study LS and those who do not (t(218)=3.15,p=0.0019), indicating that religious
students who do not study LS have less trust in using genetic tests to detect genetic
diseases at an early stage. Another significant difference was found between the
religious and secular non-LS students (t(203)=3.22,p=0.0015), in which the secular
55
students were more willing to acquire information about genetic tests and genetic
diseases at an early stage (M =3.88±0.66) than religious students (M =3.52±0.76).
Part 2 - Attitudes towards late-onset diseases
Fig. 2 shows the mean of the 'attitudes towards late-onset diseases' for the 4 groups
we compared (i.e. (LS students, non-LS students) X (religious, secular)).
Attitudes towards late onset diseases
4.5
Likert Mean Score
4
3.5
3
Religious
2.5
Secular
2
Do not study LS
Study LS
Figure 2: Mean of the Part 2 statements dealing with 'attitudes towards late-onset diseases' for the 4
groups we compared. (i.e. (LS students, non-LS students) X (religious, secular)).
The results for this part of the questionnaire showed no significant differences among
the 4 groups of students. They showed very little difference amongst secular students
between those who do and do not study LS. However, we did find a significant
difference (t(236)=2.36,p=0.019) between religious LS-students (M=3.58 SD±0.88)
and religious non-LS students (M=3.28 SD±0.96), which showed, like the results of
Part 1, that the religious students who do not study LS are less willing to receive
genetic information.
Part 3 -Attitudes towards examining the fetus for genetic disorders
The results for Part 3 showed an even stronger interaction between religious belief
and field of studies ((F(1,463)=14.09 (p<0.0001) (see Table 1). Fig. 3 illustrates the
mean of the 'attitudes towards examining the fetus for genetic disorders' for the 4 groups
we compared (i.e. (LS students, non-LS students) X (religious, secular)).
56
Attitudes towards examining the fetus for
genetic disorders
4.5
Likert Mean Score
4
3.5
3
2.5
Religious
Secular
2
Do not study LS
Study LS
Figure 3: Mean of the part 3 statements dealing with 'attitudes towards examining the fetus for genetic
disorders' for the 4 groups we compared (i.e. (LS students, non-LS students) X (religious, secular)).
On this topic the secular students (both LS and non-LS) scored highest, though there
was very little difference among the LS students between the religious and secular
students. Amongst the secular students, those who do not study LS showed a more
positive attitude towards examining the fetus (M=3.39 ± 0.61) than those who do
study LS (M= 3.14 ± 0.7), with a high correlation (t(230)= 2.51 (p=0.0128)), as seen
in Figure 3. Surprisingly, this result is the opposite of the trend we had seen until now,
suggesting that the LS students may be more critical to performing tests that can
endanger the fetus. Amongst the religious students, we found a trend similar to that
we had seen in parts 1 and 2: a significant difference between the LS students and the
non-LS students (t (233)=2.81 p=0.0054), with religious non-learners of LS less
willing to take risks in assessing the fetus (M=2.76±0.72) than religious students who
do learn LS (M=3.03±0.62).
Of the three topics in our questionnaire, this was the only for which the gender factor
contributed to the differences between the students. We therefore also included a
separate analysis for men and women to determine the interactions between religious
belief, field of study and gender in attitudes towards fetus examination (see Table 1).
Fig. 4 shows the mean of the 'attitudes towards examining the fetus for genetic disorders'
amongst male students in the 4 groups we compared (i.e. (LS students, non-LS
students) X (religious, secular)).
57
4.5
Attitudes of men towards examining the
fetus for genetic disorders
Likert Mean Score
4
3.5
3
Religious
2.5
Secular
2
Do not study LS
Study LS
Figure 4: Mean of men’s attitudes in Part 3 statements dealing with 'attitudes towards examining the
fetus for genetic disorders' for the 4 groups we compared (i.e. (LS students, non-LS students) X
(religious, secular)).
There is a significant difference between the attitudes of the secular and religious men
regarding the examination of the fetus for genetic disorders (F(1,197)=28.64, p<0.0001)
(see Table 1). The secular students, both LS and non-LS, produced higher attitude
scores than the religious students.
Among women, a strong interaction can be seen between religious affiliation and field
of studies ((F(1,255)=15.56 (p=0.0001) (see Table 1). Fig. 5 shows this interaction,
and presents the mean of the 'attitudes towards examining the fetus for genetic disorders'
for female students in the 4 groups we compared (i.e. (LS students, non-LS students)
X (religious, secular)).
4.5
Attitudes of women towards
examining the fetus for genetic
disorders
Likert Mean Score
4
3.5
3
2.5
Religious
Secular
2
Do not study LS
Study LS
58
Figure 5: Mean of the women’s attitudes in Part 3 statements dealing with 'attitudes towards examining
the fetus for genetic disorders' for the 4 groups we compared (i.e. (LS students, non-LS students) X
(religious, secular)).
The secular female students (both LS students and non-LS students) scored highest in
their attitudes towards examination of the fetus. There was no difference for the
female LS students between the religious and the secular students, but all the other
comparisons showed significant results. As seen in Figure 5, a comparison between
the LS and the non-LS female secular students (t(137)=2.39 p=0.0183), shows that
studiers of LS scored less than non-studiers, indicating they are more critical towards
genetic tests that might risk the fetus. Comparison of the female religious LS students
(M=3.09±0.65) and non-LS students (M=2.68±0.72) shows a significant difference
(t(118)=3.22 p=0.0016) that indicates even less trust amongst the non LS religious
women to genetic tests that might risk their fetus. This tendency can also be seen
between secular and religious non-LS students, where we see significant differences
in their willingness to risk the fetus (t(91)=4.74 p=0.0001).
Discussion
The goal of this study was to probe the attitudes of Israeli undergraduate students
towards genetic issues and discover how these are affected by their field of study,
their religious beliefs and their gender. The study focuses on religious and secular
Jewish students, some of whom study life science and have a firm genetic education
background, while others study subjects with no connection to genetics and therefore
have less genetic knowledge or none. We analyzed our subjects’ perceptions towards
three aspects of genetic testing. These perceptions can serve as indicators of the
students' genetic literacy and of their willingness to perform genetic tests, and may
also be predictors for their future behavior.
The main finding of the first research question, which addressed students’ attitudes to
the early detection of genetic diseases, suggests that the students’ religion was an
influential factor on how their previous knowledge of genetics affected their attitudes.
In religious students, the effect of the knowledge is far more substantial, and it was an
acute indicator amongst the religious members of our study population for more
59
positive attitudes towards genetic tests. On the other hand, among the secular
students, whose attitudes were more positive from the start, the fact that they study
life sciences did not significantly alter their genetic attitudes in the field of early
detection of genetic diseases. This means that among those who lack genetic
knowledge, religiosity may be a crucial barrier for positive genetic attitudes. Studies
of religious populations in other countries have yielded similar results. For example,
in a study that compared African-Americans and Latinos with the same understanding
of genetic testing who identified themselves as religiously committed, religion was a
significant predictor for negative attitudes towards genetic testing (Singer, Antonucci,
& Van Hoewyk, 2004) and towards science (Bauer, Allum, & Miller, 2007).
The second research question deals with late-onset diseases, diseases that are revealed
at a late stage of life and allow good health for approximately 40 years, which raises
controversial questions regarding whether it is better to be checked for them or not to
know that you have the diseases at all. Our findings revealed that among religious
students, knowledge of genetics is an important factor in determining positive
attitudes towards running genetic tests for late onset diseases. It may be that students
who study life sciences and know more about these tests and diseases have a more
positive attitude to having the tests because knowledge reduces uncertainty and
provides an opportunity for appropriate planning, even in cases when one knows that
one is at higher risk for the disease. The influence of knowledge (Wiggins et al.,
1992) as well as religious affiliation (Wit, Tibben, Duivenvoorden, Niermeijer &
Passchier, 1998), have been previously shown in regard to Huntington's disease, one
of the known late onset diseases and the disease addressed explicitly in our
questionnaire.
The third research question deals with the examination of the fetus for genetic
disorders, a controversial issue since this examination might lead to an abortion. The
examination can reveal diseases of varying severity, giving rise to a range of family
dilemmas. As seen in the first two research questions, here too the attitudes of the
religious students who study life sciences tended to be more positive. Previous
studies have shown that there is not always an exact correlation between belief and
behavior, and that often the decision-making of a religious person regarding the
testing of the fetus differs from the official religious stance (Frumkin, Raz, PlesserDuvdevani & Lieberman, 2011). Our results also suggest that individuals’
60
background, including their previous or current studies, can sometimes influence their
attitudes even more than their religious beliefs. Despite this caveat, religious belief
does seem to have a significant influence on students’ decision-making, since
religious believers throughout the world believe that a Higher Power causes
congenital problems or the loss of a pregnancy (Shaw & Hurst, 2008).
An interesting innovation found in the students’ attitudes towards examining the fetus
for genetic disorders is that it is among the secular students who do not study life
sciences that the attitudes towards genetic testing were most positive, more than
among all the other sub-populations tested. This finding can be a reflection of their
desire to have an ‘ideal’ child, a phenomenon that has been noted among secular
educated women in Israel, who choose to perform prenatal genetic diagnosis because
of their fear of having a sick and/or socially unfit child in an unsupportive
environment (Remennick, 2006).
The fact that secular students of life science were less willing to undertake genetic
testing than their non-life science studying counterparts might imply that that the
addition of genetic knowledge may enhance the students’ critical thinking towards
genetic procedures, since in several cases some of the genetic tests may be
unnecessary and even useless for part of the population. The critical thinking needed
in this case is that of analyzing and evaluating the information (National Council for
Excellence in Critical Thinking, NCECT), examining and querying the evidence,
assessing the information about different genetic tests, and subsequently making
informed decisions regarding whether to take these tests or not. Our claim that the
additional genetic knowledge might have developed critical thinking has been shown
in previous cases, which showed that though more knowledge of genetic testing raises
enthusiasm for genetic testing, it also makes people wary of performing too many
genetic tests (Solli, Bach, & Åkerman, 2014). All these imply that better knowledge
does not simply lead to a blind acceptance of genetic tests, but that it rather indicates a
certain level of critical thinking towards the options with which one is confronted.
All three parts of the questionnaire indicated that religious LS learners show more
positive attitudes towards genetic tests than religious students who do not study life
sciences. We suggest two possible explanations for the differences between the
religious groups:
61
1. Studying sciences exposes the learners to scientific knowledge, expanding their
scope and enabling them to have more positive attitudes towards the scientific system.
The question remains, why is this explanation not relevant for the secular students'
attitudes?! Is studying sciences a more significant event for religious students than it
is for students who are not religious?
2. Perhaps, a priori, the scientific perceptions of the religious students who study life
sciences are different than those who do not study life sciences. Possibly, religious
youths who are interested in science recognize the significance of scientific activity,
and this leads to their increased trust in science. If they choose to study science in the
university, this recognition is strengthened and the studying creates a feedback of
positive attitudes towards scientific concepts. This means that their attitudes and
perceptions were not altered because of their studies, but that they were more
accepting of the scientific system to begin with, when they made their initial choice to
study life sciences.
As we mentioned before, this research was conducted among Jewish Israeli students,
and in Jewish tradition it is legitimate for a religious believer to study sciences.
Maimonides notes the importance of observing nature as a way to reach an
understanding of the Creator of the world, and a way to reach love of God (Basic
Laws of Torah, Chapter B section B). Based on that fundamental value, Jewish
philosophers over the last generations have reached a consensus that studying
sciences does not contradict religion, but on the contrary, it enables Jewish believers
to strengthen their belief by studying the wonders of creation and improve our world
in scientific domains (Ruderman, 2001; Soloveitchick, 1944). This gives Jewish
religious people the legitimacy to study sciences, and once they do so, they probably
have a tendency to express more trust in scientific concepts.
Of the three factors we traced in this research, it seems that the most influential factor
is the students’ religious belief. It is the factor that influences the students' attitudes,
and can probably be a predictor for the genetic behavior and choices the students will
exhibit in the relevant stage of life. It is therefore important to determine students’
religious beliefs prior to genetic counseling or prior to intervention programs, in order
to ‘tailor’ the genetic counseling appropriately. This supports previous findings,
which have shown that emotion, religious and secular values and beliefs, and non62
institutional knowledge, are all at the very core of public understanding of genetic
testing (Doolin & Motion, 2010). The differences in attitude between the religious
students who learn life sciences and those who do not are significant throughout the
three domains of our research, and addressing them would therefore make any
potential customized genetic counseling more precise.
The students’ field of study is a domain that influences the attitudes of religious
students in particular, and might also be a predictor for future actions among this
sector. Our findings stress the need for the intense education of the religious sector in
science, and particularly in genetics, so as to diffuse the negative attitudes and low
levels of trust of non-scientifically educated religious students.
Of the three factors we examined, gender has the smallest influence on the students’
attitudes, showing only a mixed trend of influence. The students’ gender will
therefore probably not be a reliable predictor for genetic behavior, and for the choices
the students make in genetic situations. These findings support the fact that there has
been a shift in the last few decades towards a more "liberal" view of gender roles in
western countries, meaning that people are less likely to believe in the need for a
sharp gender division, and are willing to grant a wider range of social choices for
women (Inglehart & Norris, 2003) exhibiting more liberal attitudes towards gender
roles (Fodor & Balogh, 2010). That is probably why we cannot detect a certain trend
or a strong gender influence on our students’ attitudes towards genetic topics.
Limitations of the Study
The central limitation of this study is that, due to its limited scope, it is not
representative of the full diversity of Israel’s population. Using undergraduate
students was a useful means of gathering data from a population of the appropriate
age and of assessing the impact of genetic literacy on attitudes, but this choice
necessarily limited the population in important ways. As we have already noted, this
choice required us to exclude non-Jewish students from the sample, and it also meant
that the study’s scope excluded other sectors of Israel’s population that tend to be
underrepresented in higher education institutions (e.g. people from lower
socioeconomic backgrounds).
63
The cultural diversity in the state of Israel is extremely high, since it is composed of
individuals from multiple ethnic and cultural backgrounds that embrace a variety of
religious, national and cultural identities. The Jewish sector itself is divided into
multiple religious and cultural sub-groups ranging from “secular” to “semireligious/traditional” to “national-religious” to “ultra-religious,” divisions which can
translate into extreme diversity in values, education and daily practices/behavior.
Israel’s non-Jewish minority groups incorporate an additional complex diversity into
its population, differing significantly not just from the already diverse Jewish
population, but from one another as well.
Properly and fully addressing all of these groups’ relationships with genetic
counseling is extremely important, but beyond the scope of our study. Our limited
venture is only the first step towards gathering the information necessary to fully
understand and address the needs of everyone who can and should benefit from the
advantages of genetic counseling.
64
Appendix 1: Full Questionnaire
Information for research purposes:
Academic institution _____________
Faculty ________________
Course _________________
Nationality: Jewish / Muslim / Christian
I describe myself as: ultra-orthodox/ national religious / semi-religious / secular.
Gender: male / female
Section A
1. What is the relationship among genes, DNA, and chromosomes?
a. Genes are composed of DNA and lie within chromosomes.
b. Genes are separate entities from either DNA or chromosomes.
c. Genes are found only in chromosomes and not DNA.
d. Genes are found only in DNA and not chromosomes.
e. Chromosomes are composed of genes but not DNA.
2. Adult height in humans is partially determined by our genes. When environmental
conditions are held constant, humans have a wide variety of heights (not just short,
medium, and tall). Height is probably influenced by:
a. one gene with two alleles.
b. a single recessive gene.
c. a single dominant gene.
d. several genes.
e. only paternal genes.
3. Molecular genetic engineering is possible
a. because all living organisms have the same DNA sequence.
b. because all living organisms have DNA as their genetic material.
c. because all living organisms have different but compatible structures of DNA.
d. because different genetic materials other than DNA are made compatible by scientists.
e. only among plant species or among animal species, but not between plants and animals.
4. Sometimes a trait seems to disappear in a family and then reappear in later
generations. If neither parent has the trait, but some of the offspring do, what would
you conclude about the inheritance of the trait?
a. Both parents are carriers of the recessive form of the gene.
65
b. Only one parent has two copies of the recessive form of the gene.
c. Only one of the parents has a dominant form of the gene.
d. Only one parent has a copy of the recessive form of the gene.
e. It is most likely the result of new mutations in each parent.
5. A woman has been told she carries a mutation associated with breast cancer. How
does this influence her likelihood of developing breast cancer?
a. Her risk will be no different from any other healthy woman.
b. She will likely not get breast cancer.
c. She is at an increased risk for breast cancer.
d. She will definitely get breast cancer.
e. She already has breast cancer since she carries the mutated gene.
6. Cystic fibrosis (CF) is a recessive disorder, meaning that an individual must have two
copies of an abnormal CF gene to be affected. What is the probability that a child of
two individuals who each have one copy of the abnormal gene will be affected with CF?
a. 0%
b. 25%
c. 50%
d. 66%
e. 75%
Section B
Part 1
In the following sections you should indicate the degree of agreement with the various
statements.
Genetic research now allows early detection of diseases.
Strongly
disagree
1. I agree to take DNA tests intended for early
detection of diseases, even if there is no
treatment for these diseases yet.
2. I would inform my children about DNA test
results for genetic diseases I was tested for,
when they are about to get married.
3. I would inform my brothers and sisters of a
66
Disagree
Not sure
Agree
Strongly
agree
DNA test result indicating I carry an inherited
disease.
4. I would not want a genetic survey to inform
me that I am at risk for a genetic disease.
5. As long as there is no treatment for a
disease, I do not want to have a genetic test for
that disease.
Part II
Huntington's disease is a genetic disease caused by a dominant gene mutation.
Symptoms begin in adults (usually from the age of 40. Until then there are no signs of
illness). The disease is fatal after a period of suffering.
Strongly
Disagree
Not sure
Agree
disagree
Strongly
agree
6. Every child should be examined for the
disease immediately upon birth.
7. There is no reason to check for the gene
for this disease.
If the person gets sick, he will be
diagnosed in due time.
8. It is preferable that a person does not
know whether he has the gene for this
disease or not.
Part III
Strongly
disagree
67
Disagree
Not sure
Agree
Strongly
agree
9. In late onset diseases, such as
Huntington's disease, the disease should
be examined prenatally. The fetus should
be examined in amniocentesis, even if the
examination endangers the pregnancy.
Deafness is a syndrome that can be caused by mutations. It is now possible to examine a
fetus prenatally for mutations causing deafness.
Strongly
Disagree
Not sure
Agree
disagree
Strongly
agree
10. There is no reason to examine genes
for deafness in the embryonic stage, as
this is an illness people can live with.
11. If the genetic examination discovers
that the fetus is deaf, it is recommended to
have an abortion.
12. The deafness genes should be
examined and the family should deal with
the results per its discretion.
13. The state of Israel should not fund
research dealing with diseases such as
deafness, which are not life-threatening.
Nowadays there is a method (PGD) enabling examination of an inherited disease
existing in the family, in embryos in vitro, before their introduction into their mother's
womb. In this method, only healthy embryos are inserted into the womb.
Strongly
disagree
68
Disagree
Not sure
Agree
Strongly
agree
14. I think such examinations have future
ethical dangers.
15. Every available genetic examination
should be performed in the fetus, to rule
out the maximal number of diseases a
child might be born with.
69
Chapter 3
The Moral Reasoning of Genetic Dilemmas amongst Jewish Israeli
Undergraduate Students with different Religious Affiliations and Scientific
Backgrounds
Abstract3
The main objective of this study was to shed light on the moral reasoning of
undergraduate Israeli students towards genetic dilemmas, and on how these are
affected by their religious affiliation, by the field they study and by their gender. An
open ended questionnaire was distributed among 449 undergraduate students in
institutions of higher education in Israel, and their answers were analyzed according
to the framework described by Sadler & Zeidler (2004). They were divided into 2
major categories: those whose reasoning was based on the consideration of moral
consequences (MC), and those who supported their opinion by citing nonconsequentialist moral principles (MP). Students' elaborations to questions dealing
with values towards genetic testing showed a correlation between the students'
religious affiliation and their reasoning, with religious students' elaborations tending
to be more principle based than those of secular ones. We conclude the paper by
offering several practical recommendations based on our findings for genetic
counseling that is specifically tailored to fit different patients according to their
background.
Key words: moral reasoning; genetic dilemma; undergraduate students; decision
making; religious affiliation; genetic testing; qualitative analysis.
Introduction
With the scientific and genetic progress of the last three decades, genetic diseases can
now be detected before or during pregnancy. This progress can drastically reduce the
frequency of hereditary diseases, which makes genetic counseling an important and
relevant domain in every society. And yet, the willingness to receive counseling and
3
Siani, M., & Assaraf, O. B. Z. (2016). The moral reasoning of genetic dilemmas amongst Jewish
Israeli undergraduate students with different religious affiliations and scientific backgrounds. Journal
of Genetic Counseling, 25(3), 596-609.
70
genetic testing is not always common in every society, and is influenced by the
individual’s cultural background (Lewis, 2002; Raz & Atar, 2003; Shaw, 2011) and
scientific knowledge. Because our society is culturally diverse, genetic counselors are
expected to encourage people to make informed decisions that reflect their own
personal and cultural beliefs, attitudes and values (National Society of Genetic
Counselors, 2013).
Informed decisions are defined as those that are “based on relevant information,
consistent with the decision maker's values and behaviorally implemented” (Marteau,
Dormandy & Michie, 2001, pp. 99). In light of this definition, cultural factors are of
great influence in the decision making process, especially when it comes to issues like
genetic testing (Awwad, et al., 2008; Ten Have, 2001). This means that, in addition to
scientific knowledge, cultural background - including religious affiliation - is a vital
factor that inspires individuals’ decision making and moral reasoning.
Moral reasoning has been defined in various ways. In the context of this study it refers
to "individual or collective practical reasoning about what, morally, one ought to do"
(Richardson, 2014, Introduction). In the field of clinical decision making, including
genetics, skills such as knowledge acquisition, discussion of options, understanding
odds, pros and cons, and clarification of patient values are all required for making
informed decisions (Boerwinkel, Knippels & Waarlo, 2011; Elwyn et al., 2013;
Makoul & Clayman, 2006). Our emphasis in this study will therefore be on the
subjects’ previous scientific knowledge, as well as the religious factors that influence
their moral reasoning about genetic issues, and therefore also their decision making.
Theoretical background
Cultural influences on scientific and genetic conceptions
Like decision making, comprehension of scientific and genetic information is also
affected significantly by cultural influences (Lee et al., 2005; Pivetti & Melotti, 2013;
Shaw & Hurst, 2008). Culture is defined as the totality of beliefs, values, behaviors
and communication patterns among members of a cultural group (Parette, 1999).
Research on the relationship between culture and learning about science has shown
that only when students' culture is taken into consideration can there be significant
71
learning and higher achievement (Lee et al., 2005), while integration of religious
beliefs into the understanding of science reduces the tension between these domains
(Starr, 2010). Science education researchers cast culture as a system of implicit and
explicit beliefs and values located within entities (e.g., individuals, groups), or a set of
dynamic practices constructed and reconstructed through participants’ engagement in
community activities (Parsons & Carlone, 2013).
As a part of our cultural background, our religious beliefs affect our approach to
science in general and to genetics in particular. This has been shown in cases as wide
ranging as Muslim society in Saudi Arabia (Aqueel, 2007), Chinese society in
Australia (Ota Wang, 2001), Pakistani society in Great Britain (Shaw & Hurst, 2008)
and religious women in Italy (Pivetti & Melotti, 2013). In Israel, where our study took
place, differences in religious belief and custom are clearly reflected in differing
genetic practices. In the ultra-religious Jewish society, women refrain from doing
amniocentesis because of religious restrictions that forbid selective terminations,
whereas in secular Israeli society prenatal diagnosis and selective termination are
supported, independently of the rabbinical stance (Raz, 2009). The rejection of
pregnancy termination by many religious communities often prevents participation in
genetic testing (Rosner, Rosner, & Orr-Urtreger, 2009). The National Religious sector
in Israel shows a higher percentage of performing genetic tests than the UltraOrthodox community, but still lower than in the secular sector (Sher et al., 2003).
Thus, in these societies, the "options" raised by the genetic counselor can at times
contradict the religious or traditional values of the patient.
Many religious populations that have been investigated believe that only God knows
why a given situation occurs. They therefore do not wish to intervene before or during
pregnancy, believing the situation to be out of their control anyway (see for instance
Ngim et al., 2013; Pivetti & Melotti, 2013; Shaw & Hurst, 2008). And yet, studies
have also shown that there is not always an exact correlation between belief and
behavior. Though religious people usually prefer to rely on God, there are cases when
- despite the fact that religious rules do not permit termination - some religious people
nevertheless choose to do so if their fetus is sick (Raz, 2009).
72
Decision making
Throughout our life, we are required to make decisions on a wide range of topics. We
are usually not taught to make these decisions, and most are therefore intuitive,
influenced chiefly by our own values (Saaty, 2000). Researchers have realized that the
participation of the public in scientific decisions is crucial, since the public no longer
trusts scientists blindly, and areas such as genomics and modified food are giving rise
to many ethical and social dilemmas in which the scientists are trying to involve the
public (Wilsdon & Willis, 2004). As the public gradually becomes more involved,
their decision making must also become more informed. To ensure informed decision
making on genetic issues, more effort must be invested in presenting the benefits,
risks, and limitations of genetic testing, since genetic issues are scientifically
complicated, and as a result even genetically educated societies can sometimes show a
lack of understanding of the consequences of testing (Haga et al., 2013).
Moral reasoning
Moral reasoning is a procedure in which one decides what one ought (morally) to do
on the basis of one's values. Prior qualitative analysis has revealed that moral
considerations can significantly influence the decision making processes (Sadler &
Zeidler, 2005). People tend to rely on moral factors when making decisions on socioscientific issues (Bell & Lederman, 2003), which means that socio-science issues are
linked to moral reasoning. High levels of moral reasoning have been described in
terms of cognitive flexibility, or the ability to understand, consider, and weigh
multiple frameworks (Endicott, Bock & Narvaez, 2003). It has been found that
participation in formal education, such as higher education, develops moral reasoning
(King & Mayhew, 2002).
Values are known as one of the components that influence the making of choices
between alternative courses of action (Dietz et al., 2005; Kortenkamp& Moore, 2001;
Oreg& Katz-Gerro, 2006; Stern et al., 1999; Stern, 2000). For the purpose of our
study, values are defined as: the principles people use to select and justify their
actions and to evaluate people and events. The value priorities of individuals are
affected by their social experiences, such as religion, gender, education, occupation,
and cultural background. In turn, they also influence those individuals’ actions in
domains such as religion and environment (Schwartz, 1992).
73
When dealing with the moral reasoning of individuals on genetic health issues, and
with the values reflected therein, we must be aware of the norms and values at risk in
controversial issues such as prenatal diagnostics and pre-symptomatic genetic testing,
which confront people with difficult choices (Van der Zande et al., 2009). Since test
outcomes are ambiguous and other people (i.e. family members) are also involved,
people often base their choices on moral grounds, and not necessarily on scientific
knowledge (Van der Zande et al., 2009). High school students have been found to
make significant use of moral reasoning when discussing genetic tests (Lindahl,
2009), genetic engineering (Sadler & Zeidler, 2005) and biotechnology (Dawson
&Venville, 2009). Students employed moral reasoning by using cognitive rationalistic
reasoning at times, and by using emotive reasoning at others (Dawson &Venville,
2009; Lindahl, 2009; Sadler & Zeidler, 2005).
Gender influences
Since decision making is affected by behavioral characteristics, it is quite likely that
gender will be a factor that influences decision making in the context of genetic
counseling. Women can have different considerations, values and concerns than men,
and are also perceived differently than men in different cultures (Awwad et al., 2008;
Inglehart & Norris, 2000; Loo & Thorpe, 1998; Signorielli, 2012). Gender has been
found to influence ethical decision making (Beekun, 2010; Curtis, 2012; Jaffee&
Hyde, 2000; Rothbart, Hanley & Albert, 1986), as well as risk preference (Taylor,
2011), with women having been found to be less risk seeking than men (Powell &
Ansic, 1997). All these differences might influence men and women's elaborations on
moral decisions concerning genetic issues.
Objective and research questions
The main objective of this study is to shed light on the moral reasoning of
undergraduate Israeli students towards genetic issues (with an emphasis on genetic
counseling) in relation to their religious affiliation, to their prior scientific knowledge
and to their gender. Our research questions are therefore:
1. What is the connection between the religious affiliation of undergraduate
students and their moral reasoning in relation to genetic issues?
74
2. What is the connection between
the scientific background of
undergraduate students and their moral reasoning in relation to genetic
issues?
3. What is the connection between the gender of undergraduate students and
their moral reasoning in relation to genetic issues?
Methods
Participants
Our study population was composed of undergraduate students from 4 out of the 5
Israeli universities as well as 2 colleges for teacher training. We focused specifically
on undergraduate students because they are at the relevant age for genetic counseling
concerning birth defects and genetic diseases.
Our goal in constructing the sample was to achieve a large enough sample of each of
our six basic categories (i.e. religious students vs. non-religious ones, life-science
studiers vs. non-life-science studiers, male vs. female students). We therefore
appealed by email, at the beginning of the 2013 academic year, to lecturers in all
Israeli universities and colleges who teach a variety of subjects that are studied at
universities. Of these, 50% were willing to participate and allowed us to distribute the
questionnaire in their classes. With those, we arranged a mutually convenient time
during the semester to come to their class and distribute our questionnaire. The
students were told that the questionnaire was non-mandatory, that their answers were
confidential and that its findings would be used for research purposes only.
Completing it took approximately 30 minutes, and was done during the lesson, with
one of the researchers present to answer questions. We continued to administer the
questionnaire and collect data throughout the 2013 academic year until we achieved a
sample that we judged to be sufficiently large and balanced.
The final sample consisted of 449 Israeli undergraduates. We approached 560
students on the whole, of whom 20% declined to participate. 73% of the students in
the final sample study in universities and the rest in colleges. 57% of the students
were female, the rest male; 51% identified themselves as religious or semi-religious
and the rest were secular. 54% studied life sciences (LS) and the rest studied subjects
75
with no connection to genetics, such as economics, education or computer
engineering.
The first part of the questionnaire asked the students about their personal details. We
asked the students to circle the religious affiliation that suits them: secular, semireligious, National religious or Ultra-orthodox (all well-known categories used in
everyday discourse to define religious identity in Israel). In this way the sample "selfidentified" the students' religious affiliation. It should be noted that this research was
found to be exempt from ethics review since the interview was voluntary, anonymous
and did not include any disclosure of health information of any kind.
One important limitation to note in our sample is that it does not include students
from Israel’s non-Jewish population, which includes Christian and Moslem Arabs,
Druze, and Bedouins. Of the students who answered our questionnaire, only 3%
identified themselves as non-Jewish, a percentage far too small to produce accurate
results. We therefore omitted them from our sample, and we shall not relate in this
study to the non-Jewish Israeli population.
Questionnaire description
The questionnaire started with a short knowledge test consisting of 6 multiple choice
questions (Appendix 1) that are part of the tool developed by Bowling et al. (2008).
The questions were chosen from different concepts identified in the Bowling tool as
central to genetic literacy. This part of the questionnaire is only intended to clarify the
difference, if one exists, between the genetic knowledge of students studying and not
studying life sciences.
The main part of the questionnaire included a genetic dilemma with 2 open ended
questions (Figure I), and 4 scenarios with statements (Figure II). The participants
were asked to state their agreement with each statement and explain their answer in
their own words.
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Figure I: The genetic dilemma and questions that followed it
Keren is in the first trimester of her pregnancy. She comes to the clinic for genetic
counseling and says she has a brother with mental retardation. Her mother always told her
that her brother's birth probably occurred with an abnormal supply of oxygen, and
therefore he was mentally retarded. Keren is interested in doing all possible tests to
determine whether the fetus has a risk of mental retardation. She also asks that the tests she
conducts will remain strictly confidential, and that her family should in no way be aware of
the genetic testing conducted, certainly not her 30-year-old sister, who is not married yet.
She is tested and found to be a carrier of a gene that causes mental retardation. Happily,
the fetus is normal. She is aware that her mother and sister might also be carriers of this
gene, but does not want to share the fact that she performed genetic tests, and what their
results were.
A. In your opinion, what ethical questions arise from this case?
B. What considerations and dilemmas can rise from this case, assuming we know that the
syndrome causes inherited mental retardation?
77
Figure II: The 4 scenarios and statements for which elaborations were requested.
Scenario 1: Genetic research now allows early detection of diseases.
1. I would inform my brothers and sisters of a DNA test result indicating I carry an inherited disease.
2. I would not want a genetic survey to inform me that I am at risk for a genetic disease.
Scenario 2: Huntington's disease is a genetic disease caused by a dominant gene mutation.
Symptoms begin in adults (usually from the age of 40. Until then there are no signs of illness).
The disease is fatal after a period of suffering.
3. It is preferable that a person does not know whether he has the gene for this disease or not.
4. In late onset diseases, such as Huntington's disease, the disease should be tested prenatally. The
fetus should be examined in amniocentesis, even if the examination endangers the pregnancy.
Scenario 3: Deafness is a syndrome that can be caused by mutations. It is now possible to
examine a fetus prenatally for mutations causing deafness.
5. If the genetic examination discovers that the fetus is deaf, it is better to have a termination.
6. The deafness genes should be examined and the family should deal with the results at its own
discretion.
7. The state of Israel should not fund research dealing with diseases such as deafness, which are not
life-threatening.
Scenario 4: Nowadays there is a method (PGD) enabling examination of an inherited disease
existing in the family, in embryos in vitro, before their introduction into their mother's womb.
In this method, only healthy embryos are inserted into the womb.
8. I think such examinations have future ethical dangers.
9. Every available genetic examination should be performed on the fetus, to rule out the maximal
number of diseases a child might be born with.
Genetic counseling deals not only with factual information but also with ethical
problems, so one must be aware of both the interests of individuals and the interests of
those who are genetically linked to them. This means that genetic information, and the
decision making that revolves around it, have a social aspect (Wert et al., 2003). The
ethical problems dealt with in this research are:
1. The role of the right to know versus the right not to know (addressed in the genetic
case and in scenario 2).
78
2. The assessment of possible risks and benefits associated with potentially
unpredictable and complex diseases (see scenarios 2, 4).
3. The extended impact of genetic information beyond the individual, and its effect on
the family or even the community (see scenarios 1, 3).
4. Predictive prenatal and preconception testing leading to early treatment and
prevention of inheritable diseases (see scenario 4).
5. The advisability of offering genetic tests for untreatable diseases (some of them late
onset diseases, as in scenario 2).
6. Informing about diseases for which the individual is at increased risk (see scenario
3).
Data analysis
The answers to the qualitative questionnaire, including the genetic dilemma and 9
open-ended elaborations to statements from 4 scenarios, were categorized according
to the method suggested by Sadler & Zeidler (2004) for classifying the moral
decision-making of students about genetic engineering dilemmas. Their study
collected qualitative data through interviews, dividing the students' responses into 2
major categories: moral consequences (MC) and non-consequentialist moral
principles (MP). MC was indicated by "consequentialism, when students justified
their positions in terms of expected outcomes" (Sadler & Zeidler, 2004 pp. 14), while
decisions in the moral principles category were based on "moral standards
independent of the consequences” (Sadler & Zeidler, 2004 pp. 16). We adopted this
basic categorization, used some of the sub-categories which had been written by
Sadler & Zeidler and added sub-categorizations that were relevant to the genetic
counseling dilemmas raised in our questionnaire.
Questionnaire validity and reliability
The questionnaire was validated in several stages. In the first phase a representative
sample of 20 full questionnaires was divided into categories by the first author of this
article. The categories of these 20 questionnaires were semantically validated (Bauer
& Gaskell, 2000) by the co-author and by two other independent researchers
(Creswell & Miller, 2000). All four researchers, two experts in genetics and two
experts in science education, each classified the answers into categories on their own.
Elaborations that led to any disagreements were discussed until a 90% agreement on
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the elaboration categories was reached (Vedder‐Weiss & Fortus, 2012). At the second
stage, the rest of the questionnaires were categorized by the first author, and revised
by the co-author according to the final categorization agreed upon. Elaborations that
led to any disagreements were discussed until an 85% agreement on the elaboration
categories was reached (Vedder‐Weiss & Fortus, 2012).
Statistical Analysis
The major student elaborations (MC and MP) were statistically analyzed using the
Nominal (=Binary) Logistic Regression model, utilizing significant variables (p≤.05).
Our two levels were either an MC or an MP elaboration. The purpose was to
determine the impact of multiple independent variables presented simultaneously to
verify which of the independent variables (religious affiliation, gender or field of
study) differentiates between moral consequences and moral principles elaborations.
The type of elaboration - moral consequences (MC) versus moral principles (MP) was
the dependent variable (Tables I-III). In order to account for multiple inferential tests,
Holm–Bonferroni method was applied on the results. Nagelkerke's R^2 was
calculated to be 0.05 for our models.
Power analysis was calculated by Sensitivity in G*Power 3.1 software, for statements 3,
7 and 8. We found that with a statistical power 0.80, α=0.05, sample of 449 students,
when the groups are equal in size, the smallest OR the test could detect is 1.73.
Results
To start our inquiry, it was necessary to evaluate the undergraduates’ genetic
knowledge. This was essential because our premise is that undergraduate students
studying life sciences know more about genetics than other students. This premise
proved true, as in all 6 multiple choice questions we asked, a larger proportion of life
sciences students answered the questions correctly. In the chi-square test we
conducted, in 5 of the 6 questions the significance level was p ≤ 0.001, and in one
question it was p < 0.05. The chi-square test's smallest value was
=6.24, p = .125; its highest was
2
2
(1, N = 465)
(1, N = 467) =71.03, p<.0001, indicating that the
life science students showed significantly more genetic knowledge. Moreover, among
the life science students, gender and religious affiliation did not significantly
influence the students' knowledge, showing that the field of study was the major
80
variable that influenced the students' knowledge. (For a full description of the genetic
knowledge questions, see appendix 1).
The genetic dilemma (see figure I) describing a severe genetic disease raised ethical
considerations amongst the students, which were classified as reliant on either MC
(moral consequences) or MP (moral principles). Examples of the elaborations of both
types for all the statements are shown in table IV. In this genetic dilemma students
were asked: "What considerations and dilemmas arise from this case, assuming
we know that the syndrome causes inherited mental retardation?"
Sentences such as: "Should we have children considering our risk for this disease?"
and "Should I tell my sister so that she will know her consequences?" reflect a
reasoning that relies on moral consequences (MC), while sentences such as: "The
parents might feel guilty for passing the gene, so they should know; or should we
leave it to God?", and "Is there a duty to report potential patients carrying this gene?"
reflect moral principles (MP).
Scenario 1 includes 2 statements that ask for elaborations regarding early detection of
diseases (Figure II, questions no. 1, 2). In statement no. 2: "Genetic research now
allows early detection of diseases. I would not want a genetic survey to inform me
that I am at risk for a genetic disease" we find elaborations reflecting moral
consequences (MC): "There are things that can be done in order to postpone or delay
the outbreak of the disease, and maybe I'll even choose to work in research of this
disease and find a cure for it", "We should know the risk factors in order to have the
possibility of avoiding them ", and "I would like to know so I can make my
considerations about having children, marriage etc." Examples of students' moral
principles (MP) for this statement are: "It's important to know these things and make a
decision accordingly" and "I would like to know and make a decision on my own"
(such statements are based on the principle of an individual’s right to know and
decide about their own body).
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Table I: Logistic Regression for elaboration no. 3:
It is preferable that a person does not know whether he has the gene for Huntington's
disease or not.
Variable
Odds ratio
95 % confidence
interval
p-value
Field of Studies
.924
.581-1.467
.737
Gender
1.053
.703-1.577
.803
Religious Affiliation
1.778
1.125-2.811
.014
Gender by Field of Studies
1.870
.741-4.719
.185
2.844
1.154-7.006
.023
Religious Affiliation by Gender
.372
.147-.937
.036
Constant
.608
Religious Affiliation by Field of
Studies
Nagelkerke's R2=0.052
82
.000
Scenario 2 of the questionnaire includes 2 open ended statements (Figure II,
questions no. 3, 4) that students were asked to elaborate upon. They address
Huntington's disease - a late onset genetic disease that causes the degeneration of
brain cells in certain areas of the brain. This degeneration causes uncontrolled
movements, loss of intellectual faculties, and emotional disturbance. Huntington's is a
dominant genetic disease, and a person who inherits the Huntington's gene will sooner
or later develop the disease, usually in their thirties or forties. It is currently incurable,
and its effects are irreversible (National Institute of Neurological Disorders and
Stroke, 2015).
For 3 of the statements in the questionnaire we found significant effects of one or two
of the independent variables on the type of elaboration (MC or MP). These statements
shall be detailed below. The logistic regression analyses of the other statements, for
which no significant affects were found (statements 1, 2, 4, 5, 6, 9), are attached in
appendix 2.
For the statement "It is preferable that a person does not know whether he has the
gene for Huntington's disease or not", we found a significant interaction (OR,
2.844, p=0.023) between religious affiliation and field of study in the students'
elaborations (table I). This difference was found to be significant only among the
religious students, while among the secular ones there is no difference between the
elaborations of LS studiers in comparison to non-LS studiers. Gender alongside
religion was also a significant parameter (p≤0.036) in this statement, suggesting that
secular men, as well as religious and secular women, have more consequentialist
concerns than religious men, whose ideas are based more on principals.
Examples of elaborations based on consequences (MC) (see Table IV) include: "He
should prepare himself mentally for this in order to be able to deal with the situation."
Elaborations that were categorized as moral principles (MP) include: "Knowledge is
power. Do not be afraid of it," "If he has this gene he should tell about it when he
meets his girlfriend, but if he just wants to do the test, why? Pray on it."
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Table II: Logistic Regression for elaboration no. 7:
The state of Israel should not fund research dealing with diseases such as deafness,
which are not life-threatening.
Variable
Odds ratio
95 % confidence
interval
p-value
Field of Studies
.825
.523-1.302
.409
Gender
.991
.663-1.480
.964
Religious Affiliation
2.100
1.341-3.286
.001
Gender by Field of Studies
2.155
.865-5.372
.099
Studies
2.123
.869-5.191
.099
Religious Affiliation by Gender
.718
.288-1.789
.477
Constant
.664
Religious Affiliation by Field of
.000
Nagelkerke's R2=0.047
Scenario 3 (figure II) consists of three statements dealing with values towards
examining the fetus for deafness, representing a mild disease. Elaborations on the
statement: "The state of Israel should not fund research dealing with diseases
such as deafness, which are not life-threatening" showed significant findings.
Although no statistical significance was found in relation to gender or to field of
study, religious affiliation was found to be significant in the student's tendency to
offer a principle based elaboration (table II, p≤0.001; OR, 2.1; 95 % CI 1.341–3.286),
such as: "the state will do as it pleases; the mother has the right to decide for herself,"
rather than a consequence-based elaboration like "diseases such as deafness, though
not causing death, affect the quality of life of the patients and their families, therefore
thorough research has to be done."
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Table III: Logistic Regression for elaboration no. 8:
I think PGD examinations have future ethical dangers.
Variable
Odds ratio
95 % confidence
interval
p-value
Field of Studies
.859
.478-1.544
.612
Gender
1.901
1.121-3.224
.017
Religious Affiliation
2.325
1.293-4.184
.005
Gender by Field of Studies
.969
.310-3.032
.957
Studies
1.198
.402-3.571
.746
Religious Affiliation by Gender
.448
.139-1.448
.180
Constant
.235
Religious Affiliation by Field of
.000
Nagelkerke's R2=0.051
Scenario 4 (figure II) deals with preimplantation genetic diagnosis (PGD), an
examination of embryos in vitro to look for signs of inherited disease before their
introduction into the mother's womb. Statement no. 8 says: "I think such
examinations have future ethical dangers." Significant differences can be seen in
Table III in the type of elaboration based on religious affiliation (p≤0.005; OR, 2.325;
95 % CI 1.293-4.184), with religious students relying significantly more on moral
principles. Students' gender was found to be significant as well (p≤0.017; OR, 1.901;
95 % CI 1.121-3.224), with women relying more heavily on moral principles than
85
men. Elaborations categorized as MC (see Table IV) are for example: "now it’s
genetic diseases, tomorrow it will be eye color or height." Elaborations categorized as
MP are for example: "Basically there's a kind of ‘social Darwinism’ in the sense that
only the best survive. This presents an ethical dilemma."
In addition to the major categories MC and MP, each of the students’ elaborations
was also divided into sub-categories. This analysis showed us that students elaborate
mainly with moral consequences regarding exposure or knowledge of medical
information or regarding preparation for the future. The main moral principles we
noted were the ones dealing with rights to medical privacy, parental rights or the
severity of the disease. Another interesting finding is that elaborations dealing with
religious principles were found in a very small percentage (less than 5%) of all the
elaborations throughout the questionnaire, even among the religious students, who
made up nearly 50% of the research population. The findings of this fine grain
analysis are not shown since its results were not necessary for the conclusions and
practical implications of this research.
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Table IV: Examples of students' elaborations. For each one examples of moral consequences (MC) and moral principles (MP) and are given.
Statement
A. What ethical questions arise from the
described case?
B. What considerations and dilemmas
can rise from this case, assuming we
know that the syndrome causes inherited
mental retardation?
Elaborations Using Moral Consequences
1. Keren is not willing to tell her family the test results, and it
1. Is it ethical to keep it a secret and not to update her
could harm her in the future.
sister?
2. Should she tell her sister, because she may fear to get married?
2. Is it okay to conduct tests like these and intervene?
1. Whether to have children considering the risk?
2. Whether to tell her sister so she will know her consequences?
1. If I am a carrier, it makes sense that they are carriers also, and if
1. I would inform my brothers and sisters
it is a serious illness, I want them to know and to do everything to
of a DNA test result indicating I carry an
avoid it.
inherited disease.
Elaborations Using Moral Principles
2. This can influence their choice of partner.
1. Should she tell her parents or maybe she should
leave it to God?
2. What's the attitude towards an abnormal child?
1. It's better that they know they might carry the same
disease.
2. Each one will decide what to do with the
knowledge.
1. There are things you can do in order to delay the onset of the
2. I would not want a genetic survey to
disease, and may even choose to engage in the study of this
inform me that I am at risk for a genetic
disease and find a cure for it.
disease.
2. There may be a chance to reduce the risk of disease with the
correct nutrition.
3. It is better that a person does not know
1. Although currently there is no cure, it is possible to develop a
87
1. I do not want to live in fear.
2. I want to know
1. Knowledge is power. Do not be afraid of it.
whether he has the gene for this disease
drug and so the person needs to know so he can catch upon the
(Huntington's disease) or not.
new discoveries.
2. He should prepare himself mentally for this in order to be able
to deal with it.
4. In late onset diseases, such as
Huntington's disease, the disease should
be examined prenatally.
The fetus should be examined in
amniocentesis, even if the examination
1. Do we really want to avoid the life of a person due
1. Yes, because I think maybe you can treat it.
2. If we discover the disease, maybe we will be able to prevent it
in the future.
that the fetus is deaf, it is recommended
to have a termination.
6. The deafness genes should be
examined and the family should deal
with the results per its discretion.
7. The state of Israel should not fund
to the knowledge that he will die at a younger age?
2. If the test can kill the fetus I think we should not do
it.
3. This fits people who have little faith. What God
endangers the pregnancy.
5. If the genetic examination discovers
2. If you just want to do a test, why? Pray on it.
wants the baby to become will happen.
1. A deaf person can live and function superbly and can be treated
by advanced devices.
1. Coping with deafness is difficult but possible. If it
is an experience that God has given you, you should
accept it.
2. This can cause great suffering to the baby and those around him
2. Each family decides for itself, and according to its'
and to the next generation as well.
conscience. Every child is a life.
1. At least they know what they are heading towards.
1. Everyone has the right over their own body. The
mother can decide whether to have a termination.
2. If in another month a cure for deafness will be found, the
2. That termination of pregnancy in case of such a
parents will go crazy.
defect is unethical in my opinion.
1. Maybe if they research it, they will even find a cure.
1. The option should exist for those who want it.
88
research dealing with diseases such as
2. Diseases such as deafness, although not causing death affect the
deafness, which are not life-threatening.
quality of life of patients and their families, and therefore
thorough research on the subject has to be made.
2. A disease you can live with, there's no reason to
stop the pregnancy.
1. It's actually a kind of "social Darwinism" in the
8. I think such examinations (prenatal
1. Now it's genetic diseases, tomorrow eye color or height.
ethical dilemma.
genetic diagnosis) have future ethical
dangers.
2. I agree, in the future we will choose specific things that
2. If you can have only healthy children, it is
decrease the genetic variation.
something that everyone wants and that's OK.
9. Every available genetic examination
1. Some illnesses have far-reaching implications for the future of
should be performed on the fetus, to rule
the fetus and family.
out the maximal number of diseases a
child might be born with.
sense that only the best survive. This presents an
2. It reduces the likelihood of future diseases.
89
1. Maybe leave something to God?
2. Sounds dangerous, like in Sparta.
Discussion
The goal of this study was to probe the values of Israeli undergraduate students
towards genetic issues. The study focuses on female and male religious and secular
Jewish students, some of them with a firm background in genetic education, since
they are students of life science, and some with less or no genetic knowledge, since
they are currently studying subjects with no connection to genetics. Our aim was to
analyze their moral considerations towards several aspects of genetic testing, using
elaborations to reflect their values. In using the phrase “moral considerations,” we are
referring to factors related to an individual’s determination of what is right, good, and
virtuous (Sadler & Donnelly, 2006). Moral considerations include formal systems of
thought within moral philosophy, as well as values reflecting one’s participation in
religious traditions (Sadler & Donnelly, 2006). This range of definition is large, but in
this way it is possible to include the various moral realities that individuals bring into
socioscientific and other real-world contexts (Sadler & Zeidler, 2004).
The main division of the moral considerations elaborated by students in this research
is between moral consequences (MC) and non-consequential moral principles (MP).
The main difference
between these two
is
that students demonstrating
consequentialism in their considerations justified their positions in terms of expected
outcomes, and an analysis of the potential benefits and disadvantages of particular
genetic testing dilemmas. Moral principles, on the other hand, are considerations in
which students made normative ethical considerations that judge the morality of an
action based on the action's correspondence to the rules the individual believes in.
These principles were based on moral standards, independent of the consequences that
might result, for example, from taking or not taking a test, or from terminating or not
terminating a pregnancy (Sadler & Zeidler, 2004). Our use of this model proved
appropriate, since it successfully revealed the students’ thoughts and opinions, and
allowed us to “zoom into” their main moral concerns.
Sadler & Zeidler (2004) found that no observable differences emerged as a function of
any of the groups they tested. In their research, both male and female students
displayed examples of all of the subcategories described. Likewise, no systematic
differences emerged between the reasoning patterns displayed by students of different
scientific backgrounds. One possibility to explain the differences is Sadler & Zeidler's
90
small sample, in which these differences are not echoed. In our research we found
some differences in the type of elaboration, due to religion, gender or field of study.
These effects were not always consistent and need further exploration.
The moral considerations analyzed in this research can serve as indicators of the
genetic literacy of the students and of their willingness to perform genetic tests, and
may also be a predictor for their future behavior in the domain of genetic testing and
genetic counseling. Moral considerations such as consequences and principles are
types of elaborations that we can expect to get from university students who are
mature enough to analyze according to these ethical considerations (Sadler & Zeidler,
2004). The scenarios presented in this research also provided the students with various
contexts, constituting a platform for dealing with decision-making in the genetic
counseling domain and raising ethical considerations such as consequences and
principles.
Religious affiliation among Jews as an influencing factor
We focused specifically on religious affiliation as a central variable, since studies
have shown that there is a relationship between religion and ethical decision making
processes in ethical situations (Nucci, 2001; Wagner & Sanders, 2001). Faith and
religion have previously been shown to be influential on questions of the meaning and
essence of life (Alvarado et al., 1995; Atkinson &Malony, 1994; Williams, 1991).
Likewise, studies done on religion and health have shown that certain religious beliefs
can interfere with the timely seeking of medical care, and may delay diagnosis and
treatment, since religious believers rely at times on faith rather than traditional
medical care (Koenig, King & Carson, 2012). These discoveries go some way towards
explaining our findings that some differences between students' elaborations were
related to their religious affiliation.
In Israel, differences in religious belief and custom are clearly reflected in differing
genetic practices, with some sectors rejecting participation in genetic testing due to
their religious beliefs (Raz, 2004; Rosner et al., 2009; Sher et al., 2003; Zlotogora,
2002). Moreover, Jewish religious students, especially those who do not study life
sciences, have been found to place less trust in genetic tests than secular students do
(Siani & Ben-Zvi, 2015). An understanding of the differences between various
religions and the beliefs associated with them will help us understand the manner in
91
which individuals relate to the tension between faith and science (Dickerson, Dawkins
& Penick, 2008). Because genetic counseling can sometimes contradict religious
positions, it is necessary (if such counseling is to be successful) to understand the
impact of religion on the process of decision making in the context of genetic
counseling (Weil, 2001). In Southeast Asia for example, researchers have indicated
the importance of reflecting the culture and context-specific nature of genetic
counseling and consultation encounters, and cited the counselees' religion as a major
influence (Zayts et al., 2013). In our research as well as in others (Pivetti et al., 2012),
the importance of religion does not emerge openly in the participants’ discourse,
though it influences the positions expressed on termination, and consequently the
attitude towards genetic testing.
Gender as an influencing factor
In addition to religious affiliation among Jews, we found that gender had some
measure of influence on the moral considerations of students. In most cases, the
influence of gender on ethical decision making was found to be inconsistent significant in one context but not in another (Byrnes et al, 1999; Curtis et al., 2012).
This was reflected in our study as well. When dealing with a late onset genetic
disease, men showed a more principle based approach than women, perhaps because
women's role as primary caregivers and their involvement with childbearing leads
them to take a more practical, consequence-based approach (Shiloh, 1994; Tibben,
1993). On the other hand, in the context of future ethical considerations, women
tended to be more concerned with moral principles, which may reflect their concern
with genetic procedures that are only performed on women. We can therefore
conclude that gender has a mixed pattern of influence on moral considerations and is a
less influential factor than religious affiliation, in which the pattern was a bit more
consistent.
Field of study as an influencing factor
The moral considerations of life sciences learners in comparison to non-learners did
not differ distinctly in most parts of the questionnaire. Since formal scientific
background has been shown to have an influence on students’ negotiation of
socioscientific issues (Hogan, 2002; Tytler, 2012; Zohar & Nemet, 2002), and since
types of values broaden as a result of studying a certain discipline (Solli et al., 2014),
92
we thought that our students’ elaborations might be impacted by their genetic
knowledge. However, we did not find the pattern we expected, and we did not find
that prior scientific knowledge had an influence on the students’ elaborations when
dealing with most of the genetic issues in the questionnaire.
That said, we did find a difference in the context of late onset diseases, where the
Jewish religious students who study life sciences tended towards a more
consequentialist approach than religious students who do not, perhaps because they
are more aware of these kinds of diseases and their genetic and psychological
meaning (Evers-Kiebooms et al., 2000). Yet another explanation might be that these
religious students’ science education has made them less concerned with their
religious principles by broadening their scope to include additional considerations.
Finally, it might mean that the religious non-LS students are more concentrated on
their principles and less conscious of the consequences that the genetic situation might
bring.
The issue of pregnancy termination
Genetic counselors are trained to present information and facilitate their patients’
decision making without letting their own religious or moral beliefs influence them in
any particular direction (Woltanski et al., 2009). This requirement relates to all
aspects of the counseling, including the delicate issue of termination (Stephens et al.,
2010).
Three of the statements in the questionnaire deal with examining the fetus for genetic
disorders that involve the possibility of termination, which is a complex issue with
many uncertainties, and as such produces differing interpretations and rulings in
Judaism (Schiff, 2002). Although there is a fundamental agreement on the distinct
Jewish attitude against termination, circumstances do affect this general agreement,
for instance if the pregnancy endangers the life of the mother (Stephens et al., 2010).
Some lenient Jewish scholars permit termination for any "major defects" that might
occur in the unborn child, and defects that make the mother and the family anxious
about the future (Gordis, 1978). The more stringent consensus position of most
Orthodox scholars is to oppose termination even for fatal disorders. Though this
consensus exists, some religious scholars, like Waldenberg and Yisraeli, do allow
termination if a fatal disease is detected in the fetus (Schiff, 2002). An interesting
93
innovation is that in all of the statements that dealt with the option of terminating the
pregnancy in this research, there is no significant difference between the religious and
secular students' elaborations, even though it is an issue that is known to be
problematic in Judaism. A partial explanation for this finding might be that nowadays
the Jewish religious population in Israel is highly integrated into secular society
(Herman et al., 2014). The religious sector works in all places: in the high-tech
industry, in the army, in the communication system and so on, and sees itself as a part
of the general society, as well as observant of religious rules. The finding relating to
termination could be a reflection of this relatively new “Westernization” that the
religious sector is heading towards, and of the influence of the secular society with
whom they work, study and live closely.
Conclusions
The most prominent conclusions of our analysis can be summed up in the following
points:
1. On the whole, the students' type of elaboration relates to the specific statement
they were asked to elaborate, but nevertheless, certain patterns of elaboration can
be seen.
2. In several statements throughout the questionnaire, we found that Jewish religious
students are concerned more with moral principles, relating less to the
consequentialist issues of the genetic situations and their implications.
3. Gender also has a mild influence, and showed a mixed pattern of moral reasoning
with no certain preference amongst women or men to reasoning which is
consequence or principle based.
4. The students’ field of study seems a little less significant than religion in
influencing their elaborations.
5. Jewish religious students do not show significant measures of concern about
religious considerations in their moral reasoning.
94
Practical Implications
Genetic counseling is a complex challenge because many issues have to be taken into
consideration, such as the patient's attitudes, knowledge and values towards the
counseling process and towards genetic testing. Patients’ past exposure, experiences
or prejudices towards genetic counseling and genetic diseases must also be taken into
consideration. The promotion of decision making in the domain of genetic testing
must be tailored to each target population according to its background, based on their
relevant exposure to and knowledge of the domain (Peters & Petrill, 2011). In light of
our own findings, we wish to offer practical recommendations for genetic counseling
that are specifically tailored to fit different patients according to their background:
a. In a genetic counseling session it is advisable to clearly ask about religious barriers,
in order to get a full picture of the patients' considerations. A discussion about their
spiritual and religious beliefs can provide reassurance, comfort and strength that
might alleviate some of the patients' distress during genetic the counseling session
(Seth et al., 2011). Despite the fact that our students’ elaborations revealed little
concern for religious considerations, these considerations are not necessarily
unimportant to the students, and they may still be exerting a latent influence on their
decision making. In this study, it seems that the Jewish students' religious affiliation
influenced the type of their elaborations. We did not ask the students explicitly to
write elaborations that rely on their religious opinions, (as Seth et al., 2011 suggest),
and this may be a reason for the lack of elaborations with religious grounds. Openly
discussing the religious opinions of those being counseled would make for a more
efficient counseling session, and help determine the relevance of their spiritual and
religious beliefs to their eventual decision (Seth et al., 2011).
b. When consulting a non-consequentialist patient, the genetic counselor can
emphasize the consequences of the genetic situation so that the patient will be able to
take as much information as possible into account, and thus make informed decisions
according to his beliefs and values.
Study Limitations
Since this questionnaire was distributed among undergraduate students, it is in effect
adapted for – and reflective of - young people of medium and high socioeconomic
95
status. Our research population therefore does not reflect all of the Israeli Jewish
population, and the questionnaire should be modified if needed for a variety of
populations, as has previously been done with a questionnaire testing informed choice
(Dormandy et al., 2007). This modification would make the questionnaire available
to diverse populations, enabling a comparison of the moral considerations of citizens
from different cultures (Zeidler et al., 2013).
In addition, the fact that the participants answered the questionnaire while at the
university campus is a limitation of the study. Their response might be affected by
social desirability since they may think that as students they are expected to be more
liberal, and to relate to universal codes rather than their own moral considerations
when asked about moral issues. Perhaps the same population would have reflected its
doubts more intensively in a different setting.
The volunteer sampling is another study limitation, since perhaps the students that are
particularly interested in genetic topics were the ones who were willing to answer the
questionnaire, while others who were less aware of these topics did not answer it at
all. This limitation may have tilted the results.
In future research using this model, we suggest the use of the genetic quiz (attached in
appendix 1) as a predictor of the genetic knowledge of the student either in place of
or in addition to the status of the student as a life-science major or not. This genetic
quiz would give a more detailed picture of the impact of genetics knowledge and be a
better predictor with less measurement error. A limitation of this study is that we did
not use this approach and for that reason we might have made errors in predicting the
genetic knowledge of our students.
Finally, though moral reasoning considerations have been shown to influence decision
making (Bell & Lederman, 2003; Sadler & Zeidler, 2005), our study, which was
based on a series of hypothetical scenarios, did not actually witness the transition
from reasoning to decision making. More research is needed in order to further
analyze the mechanisms and factors that influence moral reasoning, and to determine
whether and how this reasoning ultimately translates into moral decision making.
96
Research Recommendations
Religious commitment is a very personal issue, which has not been investigated from
a personal angle in this research. In order to gain better insight into the students'
attitudes and values, in-depth interviews can be held with students to add further
clarity and context to what they mean by each of their elaborations. These interviews
could include explicit questions regarding religious considerations, and issues that
have not yet been fully analyzed can be focused on more carefully.
In addition to the religious aspect, the interviews would also cover the personal and
familial health experiences and perceptions of the interviewee, factors that play a
central role in how individuals remember, interpret, and respond to disease risk
information (Gordon et al., 2012; Kaufman et al., 2012). A more complete
understanding of the reasons for decisions about whether to have genetic testing or
not, which we would hopefully achieve through the interviews, would help
counsellors to better communicate with women and couples, and better assist them in
making informed decisions about genetic testing (Pivetti, Montali & Simonetti, 2012).
97
Appendix 1- Questions evaluating genetic knowledge (part of the tool developed by
Bowling et al., 2008a).
1. What is the relationship among genes, DNA, and chromosomes?
a. Genes are composed of DNA and lie within chromosomes.
b. Genes are separate entities from either DNA or chromosomes.
c. Genes are found only in chromosomes and not DNA.
d. Genes are found only in DNA and not chromosomes.
e. Chromosomes are composed of genes but not DNA.
2. Adult height in humans is partially determined by our genes. When environmental
conditions are held constant, humans have a wide variety of heights (not just short,
medium, and tall). Height is probably influenced by:
a. one gene with two alleles.
b. a single recessive gene.
c. a single dominant gene.
d. several genes.
e. only paternal genes.
3. Molecular genetic engineering is possible
a. because all living organisms have the same DNA sequence.
b. because all living organisms have DNA as their genetic material.
c. because all living organisms have different but compatible structures of DNA.
d. because different genetic materials other than DNA are made compatible by scientists.
e. only among plant species or among animal species, but not between plants and animals.
4. Sometimes a trait seems to disappear in a family and then reappear in later
generations. If neither parent has the trait, but some of the offspring do, what would
you conclude about the inheritance of the trait?
a. Both parents are carriers of the recessive form of the gene.
b. Only one parent has two copies of the recessive form of the gene.
c. Only one of the parents has a dominant form of the gene.
d. Only one parent has a copy of the recessive form of the gene.
e. It is most likely the result of new mutations in each parent.
5. A woman has been told she carries a mutation associated with breast cancer. How
does this influence her likelihood of developing breast cancer?
98
a. Her risk will be no different from any other healthy woman.
b. She will likely not get breast cancer.
c. She is at an increased risk for breast cancer.
d. She will definitely get breast cancer.
e. She already has breast cancer since she carries the mutated gene.
6. Cystic fibrosis (CF) is a recessive disorder, meaning that an individual must have two
copies of an abnormal CF gene to be affected. What is the probability that a child of
two individuals who each have one copy of the abnormal gene will be affected with CF?
a. 0%
b. 25%
c. 50%
d. 66%
99
e. 75%
Appendix 2: Logistic regression analysis of elaborations no. 1, 2, 4, 5, 6, 9.
In order to account for multiple inferential tests, Holm–Bonferroni method was applied on the
results. Only the results of elaboration no. 3, 7 and 8 were correct after applying the Holm–
Bonferroni method. For that reason those elaborations' results are presented in the main
manuscript. The others (elaborations no. 1,2,4,5,6,9) are displayed in this appendix.
Logistic Regression for elaboration no.1: I would inform my brothers and sisters of a DNA
test result indicating I carry an inherited disease.
95 % confidence
Variable
Field of Studies
Gender
Religious Affiliation
Gender by Field of Studies
Religious Affiliation by Field of Studies
Religious Affiliation by Gender
Constant
Odds ratio
interval
p-value
Lower
Upper
.883
.571
1.365
.576
1.287
.867
1.911
.211
.870
.570
1.329
.520
1.350
.563
3.240
.501
1.130
.479
2.667
.781
.574
.239
1.379
.215
.740
Nagelkerke's R2: 0.017
100
.006
Logistic Regression for elaboration no. 2: I would not want a genetic survey to inform me that
I am at risk for a genetic disease.
95 % confidence
Variable
Field of Studies
Gender
Religious Affiliation
Gender by Field of Studies
Religious Affiliation by Field of Studies
Religious Affiliation by Gender
Constant
Odds ratio
interval
p-value
Lower
Upper
1.126
.712
1.780
.612
.891
.587
1.353
.587
1.150
.736
1.796
.540
1.251
.500
3.133
.633
.981
.397
2.425
.967
.485
.193
1.214
.122
.479
Nagelkerke's R2: 0.014
101
.000
Logistic Regression for elaboration no. 4: In late onset diseases, such as Huntington's disease,
the disease should be tested prenatally. The fetus should be examined in amniocentesis, even
if the examination endangers the pregnancy.
95 % confidence
Variable
Field of Studies
Gender
Religious Affiliation
Gender by Field of Studies
Religious Affiliation by Field of Studies
Religious Affiliation by Gender
Constant
Odds ratio
interval
p-value
Lower
Upper
1.262
.797
1.999
.321
.864
.564
1.322
.500
1.406
.896
2.206
.138
.664
.263
1.676
.386
1.307
.526
3.247
.564
.649
.256
1.646
.362
2.200
Nagelkerke's R2: 0.028
102
.000
Logistic Regression for elaboration no.5: If the genetic examination discovers that the fetus is
95 % confidence
Variable
Field of Studies
Gender
Religious Affiliation
Gender by Field of Studies
Religious Affiliation by Field of Studies
Religious Affiliation by Gender
Constant
Odds ratio
interval
p-value
Lower
Upper
.807
.495
1.315
.389
1.369
.878
2.135
.165
1.864
1.166
2.981
.009
1.239
.467
3.289
.667
.980
.367
2.617
.968
.547
.203
1.473
.232
2.640
deaf, it is better to have a termination.
Nagelkerke's R2: 0.034
103
.000
Logistic Regression for elaboration no.6: The deafness genes should be examined and the
95 % confidence
Variable
Field of Studies
Gender
Religious Affiliation
Gender by Field of Studies
Religious Affiliation by Field of Studies
Religious Affiliation by Gender
Constant
Odds ratio
interval
p-value
Lower
Upper
.712
.454
1.118
.140
1.019
.679
1.529
.928
1.426
.928
2.192
.105
3.203
1.291
7.947
.012
.706
.289
1.722
.444
.940
.377
2.341
.894
1.496
family should deal with the results at its own discretion.
Nagelkerke's R2: 0.032
104
.000
Logistic Regression for elaboration no.9: Every available genetic examination should be
performed on the fetus, to rule out the maximal number of diseases a child might be born
with.
95 % confidence
Variable
Field of Studies
Gender
Religious Affiliation
Gender by Field of Studies
Religious Affiliation by Field of Studies
Religious Affiliation by Gender
Constant
Odds ratio
interval
p-value
Lower
Upper
.666
.432
1.027
.066
.826
.556
1.229
.346
1.038
.683
1.577
.862
.885
.370
2.118
.784
.732
.309
1.733
.478
.894
.373
2.143
.802
.777
Nagelkerke's R2: 0.014
105
.021
Chapter 4
Should I Perform Genetic Testing? A Qualitative Look into the Decision Making
Considerations of Religious Israeli Undergraduate Students
4
Abstract
The aim of this study is to draw a picture of the concerns that guide the decision
making of Israeli religious undergraduate students and the complex considerations
they take into account while facing the need to have genetic testing or to attend a
genetic counseling session. We examined how the religious affiliation of the students
influences their perceptions toward genetics and how these are expressed. Qualitative
data was collected from 51 semi-structured interviews with students, in which
recurring themes were identified using 'thematic analysis.' The codes from the
thematic analysis were obtained according to 'grounded theory'. Our results show that
religious undergraduate students' decision making in these issues is influenced by
factors that fall under three main categories: knowledge and perceptions, values, and
norms. In order to include all the components of influence, we created the Triple C
model: "Culture influences Choices towards genetic Counseling" which aims to
generalize the complex decision making considerations that we detected. Our model
places religion, as part of culture, as its central point of influence that impacts all three
of the main categories we detected. It also traces the bidirectional influences that each
of these main categories have on one another. Using this model may help identify the
sociocultural differences between different types of patients, helping genetic
counselors to better assist them in addressing their genetic status by tailoring the
counseling more specifically to the patient's cultural uniqueness.
Key words: genetic testing; decision making; semi-structured interviews; qualitative
analysis;religion; norms; values; genetic knowledge; genetic perceptions.
4
Siani, M., & Assaraf, O. B. Z. (2016). Should I Perform Genetic Testing? A Qualitative Look into the
Decision Making Considerations of Religious Israeli Undergraduate Students. Journal of Genetic
Counseling. DOI: 10.1007/s10897-016-9942-0.
106
Introduction
With the scientific and the genetic progress of the last three decades, genetic diseases
can now be detected before or during pregnancy, which can drastically reduce the
rates of hereditary diseases, and which makes genetic counseling an essential domain
in every society. And yet, the willingness to receive counseling and genetic testing is
not always common in every society, and is influenced by the individual’s cultural
background, and by factors like family, tradition, history, privacy and religious faith
(Raz & Atar, 2003; Shaw, 2011; Ten Have, 2001). In this study we sought to portray
how these elements come together in the case of Israeli religious students, and to
examine the complex considerations they take into account while facing the need to
undertake genetic testing or to go to a genetic counseling session. To do so we
analyzed a series of in-depth interviews that we conducted with 51 religious Jewish
undergraduate students who are studying in universities and colleges throughout
Israel, adopting a qualitative grounded theory approach so as to capture the
complexity of the decision making process.
Decision making is a complex process, especially in a domain like genetic testing,
which must take numerous considerations into account. Genetic testing is a general
term, encompassing a variety of available tests that can provide information about a
person’s genes and chromosomes. In this article we shall concentrate on prenatal
genetic testing, which is used to detect changes in a fetus’s genes or chromosomes
before birth. It is offered during pregnancy if there is an increased risk that the baby
will have a genetic or chromosomal disorder (National Library of Medicine, US).
Discovering a genetic disorder through prenatal testing raises various moral questions,
such as the possibility that prenatal genetic counseling and decisions could violate the
future child's autonomy and rights. These rights could be violated, for instance, when
prenatal testing reveals a predisposition for a late-onset disease that cannot be treated
or prevented and the woman decides to continue the pregnancy, thereby deciding, in
place of the child, that it will live with an incurable disease (Jong et al., 2011). This
kind of moral question does not arise when adults perform genetic testing and decide
for themselves which measures to take in response to their own test results. Prenatal
genetic testing also raises questions regarding the need to inform other family
members of their risk (Fulda & Lykens, 2006), especially those who might be
107
pregnant, for whom this information might be crucial. The question of informing
others arises in general genetic testing too, but often in a less immediate manner.
The complexity of decision making in the field of genetic testing is reflected via the
complexity of the definitions offered for informed decision making on genetic issues.
Briss et al. (2004) defined informed decision making in the genetic domain as
occurring when individuals understand the nature of the disease or condition being
addressed, understand the clinical service and its likely consequences - including
risks, limitations, benefits, alternatives, and uncertainties, have considered their own
preferences as appropriate, and have made a decision consistent with their other
preferences and values. Rimer et al. (2004) address similar issues, claiming that
informed decision making includes understanding the screening test, its risks, benefits
and alternatives, understanding personal values and preferences, and weighing the
pros and cons of the genetic test accordingly.
These definitions show how the procedure can be quite a complicated one for any
person, but for religious individuals the considerations are even more complex.
Religious undergraduate students' decision making in these issues is influenced not
only by medical recommendations, but also by their religious values, their tradition,
and the religious rules to which they are committed (Stephens et al. 2010; Phillips,
2000). These two things do not always agree, adding an element of the general tension
between faith and science (Dickerson, Dawkins, & Penick , 2008) to the already
complicated process of informed decision making in this specific domain. Because
genetic counseling can sometimes contradict religious positions, it is necessary (if
such counseling is to be successful) to understand the impact of this cultural element
on the process of decision making in the context of genetic counseling (Weil, 2001).
This is why we have chosen to focus specifically on the religious population, in an
attempt to broaden our understanding of decision making in the domain of genetic
testing and genetic counseling. Other researchers have already identified various
factors that influence the layperson's decision making in the genetic testing domain
(see Table 1). Our interviews were designed to complement the factors detected by
other researchers while expanding the attention devoted to the religious factor, which
has been less extensively researched.
108
Table 1: Literature review of the factors influencing decision making in the field of
genetic testing and genetic counseling
The Factor
A. Genetic Knowledge
1. Explicit knowledge been acquired
Reference
2.
3.
4.
Procedural knowledge acquired
Knowledge passed in the counseling session
Acquaintance of the counselor with the
family's genetic history
5. Acquaintance of the counselee to genetic
disorders
6. Knowledge of the genetic statistical facts
7. Reliability of the information to the counselee
B. Attitudes and perceptions
1. Attitudes to genetics according to the way
they are informed
2. Attitude to health insurance and employment
3. Relevance and authenticity to the counselee's
life
4. Tolerance to uncertainty in genetic testing and
the level of reliability
5. Attitudes towards the acceptability of
abortions
C. Religion and ethnicity
1. Spirituality and likeliness to receive test
results
2. Level of religiosity in connection to the way
people perceive genetic testing
3. Ethnicity as a part of culture
D. The personal factor
1. Meeting the client's needs and expectations
from genetic counseling
2. Client's willingness for risk assessment and
personal risk
3. Parity including the family structure and the
desire for children
4. Practical motives:
a. Cost of the tests
b. Access to genetic counseling
c. Time commitment
5. Socioeconomic status to which the counselee
belongs
6. Privacy concerns
7. Emotional factors
a. Fear from genetic social stigma
b. Depression, over excitement and
feelings towards the counseling process
itself
c. Internal locus of control
109
Chen & Goodson, 2007; Frets et al., 1990; Vos et
al., 2012; Wilson, Ferguson & Thorn, 2011.
Biesecker & Peters, 2001.
Caruso et al., 2011; Frets et al., 1990
Caruso et al., 2011; Frets et al., 1990; Geer et al.,
2001.
Frets et al., 1990;
Schwartz et al., 2000.
Skirton, 2001.
Vos et al., 2012.
Morren et al., 2007
Vos et al., 2012.
Chen & Goodson, 2007; Skirton, 2001.
Chen & Goodson, 2007; Wilson et al, 2011.
Botoseneanu, Alexander, & Banaszak-Holl, 2011;
Schwartz et al., 2000.
Botoseneanu, Alexander, & Banaszak-Holl, 2011;
Schwartz et al., 2000.
Chen & Goodson, 2007
Biesecker & Peters, 2001.
Frets et al., 1990; Geer et al., 2001.
Caruso et al., 2011; Emery, 2001; Frets et al.,
1990; Wilson et al., 2011.
Chen & Goodson, 2007; Geer et al., 2001
Geer et al., 2001
Geer et al., 2001
Chen & Goodson, 2007
Geer et al., 2001
Geer et al., 2001.
Biesecker & Peters, 2001.
Chen & Goodson, 2007.
Theoretical background
Decision making in the field of genetic testing and genetic counseling
Our literature review revealed a set of factors that influence decision making in the
field of genetic testing and genetic counseling. One of the more dominant of these is
the explicit genetic knowledge that the counselee had previously acquired (Chen &
Goodson, 2007; Frets et al., 1990; Vos et al., 2012; Wilson, Ferguson & Thorn, 2011),
as well as the procedural knowledge of the counseling process (Biesecker & Peters,
2001). These aspects also include knowledge of the statistical facts associated with the
perceived risk for genetic diseases (Schwartz et al., 2000), and the reliability of the
information given to the counselee (Skirton, 2001), since some genetic tests give
uncertain test results. Counselees’ knowledge of certain genetic diseases is often
influenced by their familiarity with the disorder due to their acquaintance with
relatives who are affected by this genetic disease (Frets et al., 1990). From the
counselor's side, knowledge includes the extent to which the counselor knows the
family and is aware of all of its genetic history (Geer et. al., 2001; Frets et al., 1990;
Caruso et al., 2011).
Aside from knowledge, another central factor that influences decision making is the
counselees’ attitudes and perceptions towards complex genetic testing; how the
need for genetic testing fits into their world view. This is not unconnected to
knowledge, since better informed people tend to be more positively inclined towards
genetic counseling (Vos et al., 2012). The relevance and authenticity of the genetic
knowledge or the genetic situation to the counselee's life is influential too (Vos et al.,
2012). This factor includes the counselee's attitude towards the consequences of
getting results of genetic testing (e.g. how they might impact things like health
insurance and employment) (Morren et al., 2007). The counselees’ tolerance for the
uncertainty involved in genetic testing and their perception of its reliability both
influence the acceptability of the testing in their eyes. This perceived reliability
depends in part upon the level of trust that has been formed between counselee and
counselor (Skirton, 2001).
Religion and ethnicity have also been shown to contribute to this domain of decision
making. There is a connection between people’s spirituality and their likelihood of
receiving test results, and between their level of religiosity and the way they perceive
110
genetic testing (Botoseneanu, Alexander & Banaszak-Holl, 2011; Schwartz et. al.,
2000). The contribution of religion and ethnicity to this process is described in greater
detail below.
Decision making in the field of genetic testing and genetic counseling is also
influenced by personal factors. This includes meeting the client's needs and
expectations from the genetic counseling process, including their requests for help or
for information (Biesecker & Peters, 2001). It also includes the client's willingness to
undertake risk assessment and personal risk (Frets et al., 1990; Geer et al., 2001) and
their family structure - if the couple has children or not and the desire of the couple
for children (Caruso et al., 2011; Chen & Goodson, 2007; Frets et al., 1990; Wilson et
al., 2011). Personal reasons also encompass practical concerns, like the cost of the
tests (Geer et al., 2001, Chen &Goodson, 2007), time commitment to the procedure
(Geer et al., 2001) and access to genetic counseling. Privacy is also a relevant
personal factor, reflected in the counselees’ concern that the personal genetic
information revealed in the process should not become public (Geer et al., 2001).
Finally, the emotional aspect of the counseling process is a very influential personal
factor. It includes elements like fear of the social stigma that might be involved in
genetic decision making (Geer et al., 2001), as well as depression, overexcitement and
feelings towards the counseling process itself - all of which can influence the decision
to attend (or not to attend) counseling (Biesecker & Peters, 2001). Internal locus of
control, meaning the extent to which individuals believe they can control events
around them, including the health domain, is one of the affective factors that influence
decision making, as are additional factors like socioeconomic status, ethnicity and
culture (Chen & Goodson, 2007).
Religious influences on genetic decision making
As mentioned above, religion and ethnicity contribute to the domain of decision
making in the genetic domain (Botoseneanu et al., 2011; Schwartz et al., 2000).
Religious beliefs, as part of one's cultural background, affect one’s approach to
science in general and to genetics in particular. It has been shown that there is a
tension between science and religion, and that it is therefore necessary to integrate
religious beliefs into the understanding of science (Starr, 2010). A positive attitude
toward science has been shown to be coupled with a strongly negative attitude toward
111
religion (Astley & Francis, 2010) The effect of religious beliefs on attitudes toward
science have been shown in cases as wide ranging as Muslim society in Saudi Arabia
(Aqueel, 2007), Chinese society in Australia (Ota Wang, 2001), Pakistani society in
Great Britain (Shaw & Hurst, 2008) and religious women in Italy (Pivetti & Melotti,
2013). They were also noted amongst African and Latin Americans, who claimed
explicitly that their faith/religion would influence their prenatal testing decision, with
some patients arguing that “accepting what is given,” for example a sick child, is part
of their cultural belief system, leading to these women undergoing prenatal diagnostic
testing less often (Learman et al., 2003). In all these societies, religious or traditional
beliefs can, at times, contradict genetic recommendations, and therefore influence
decision making.
Regardless of the type of education received, most of the religious populations that
have been investigated believed that only God knows why a given situation occurs,
and therefore did not necessarily wish to intervene before or during pregnancy, since
they believe the situation is not in their control anyway (Pivetti & Melotti, 2013;
Shaw & Hurst, 2008). And yet, there is not always an exact correlation between
belief and behavior. Though religious people usually prefer to rely on God, there are
cases when - despite the fact that religious rules do not permit abortion, some
religious people nevertheless choose to do so if their fetus is sick (Raz, 2009).
Generally speaking, religious conviction has been found to be an important influence,
but not the only one, reflecting the fact that religious identity is a complex, fluid and
negotiable phenomenon (Atkin et al., 2008). This complexity has not yet been widely
researched in Israel, especially among religious undergraduate students. This study
therefore focusses specifically on that population, in an attempt to thoroughly
understand the factors that influence these students’ decision making and their
considerations while making choices in this field.
Genetic counseling in Israel
The
Organization
of
Genetic
Counselors
in
Israel
(http://www.genetic-
counselors.org.il) offers the following extended definition of genetic counseling,
citing it as "an interpersonal process in which information is offered on issues
connected to human genetic diseases and their nature, inheritance, implications, and
recurrence in a family at risk, after the counselor has investigated the family issue and
ascertained the mode of inheritance and the chances of passing it on to future
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generations." This counseling is referred to as “non-directed,” because its purpose is
“to help those counseled in making medical decisions in a non-directed manner [that
is] appropriate to their values.” As this definition shows, genetic counseling includes
the following components: 1. Interpretation of family and medical histories to assess
the chance of disease occurrence or recurrence. 2. Education about inheritance,
testing, management, prevention, resources and research. 3. Counseling to promote
informed choices and adaptation to the risk or condition (Resta et al., 2006).
Israel is a highly varied multicultural society, and approaches to genetic testing and
genetic counseling can therefore differ strongly among the different subcultures.
Israeli society also includes a large non-Jewish population, including Christian and
Moslem Arabs, Druze, and Bedouins. Our study focuses only on the Jewish
population, because properly and responsibly addressing the significant cultural and
religious differences that distinguish all of these groups from one another is a task far
greater than the scope of one study. The Jewish Israeli population consists of four
broad categories of religious affiliation, namely secular, semi religious or
“traditional”, National Religious and Ultra-Orthodox. These categories - and the
cultural connotations they imply - are familiar to the general public, and most Israeli
Jews associate themselves with one of these four groups.
This study focusses on the National-Religious sector, which, based on self-declared
affiliation, has been estimated to constitute roughly one-fifth (22%) of Israel's adult
Jewish population (Herman et al., 2014). This sector shares some (chiefly religious)
characteristics with the Ultra-Orthodox sector, but also has others in common with the
secular sector (Frumkin et al., 2011). In the field of genetic services, most of the
Israeli population uses those of the genetic clinics in hospitals in addition to clinics in
health insurance organizations, but the Ultra-Orthodox Jewish population is treated
mainly by the "Dor Yesharim" Foundation. According to the principles of "Dor
Yesharim," before a match is made by a matchmaker, the couple's genetic suitability
must be checked (Abeliovich et al., 1996). This foundation does not publicize its
findings, but it does alert the couple if there is a genetic incompatibility, suggesting
that the couple should therefore not marry (Frumkin et al., 2011). Among the National
Religious sector, young people date in a more random manner. They therefore
generally find the "Dor Yesharim" approach inappropriate (Frumkin et. al., 2011).
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Apart from their different utilization of genetic services, differences in religious belief
and custom are clearly reflected in differing genetic practices in Israel. The rejection
of pregnancy termination by many religious communities often prevents participation
in genetic testing (Rosner , Rosner, & Orr-Urtreger ,2009). In Ultra-Orthodox Jewish
society, women refrain from doing amniocentesis because of religious restrictions that
forbid selective abortion, whereas in secular Jewish Israeli society prenatal diagnosis
and selective abortion are supported, independently of the rabbinical stance (Raz,
2004). The National Religious sector shows a higher percentage of performing genetic
tests than the Ultra-Orthodox, though still lower than that of the secular sector (Sher
et. al., 2003).
Life-long learning in the context of genetic testing
In addition to a positive attitude towards taking the tests, informed decisions about
genetic testing also require those who make them to have sufficient knowledge of the
testing options and of their own genetic background. Lack of knowledge is sometimes
the driver of negative attitudes and biased risk perceptions towards science (Bauer et
al., 2007), and is even associated with more discriminating attitudes towards science
in general (Evans & Durant, 1995). Researchers have realized that the participation of
the public in scientific decisions is crucial, since the public no longer trusts scientists
blindly, and areas such as genomics and modified food are giving rise to many ethical
and social dilemmas in which the scientists are trying to involve the public (Wilsdon
& Willis ,2004). Thus, as the public gradually becomes more involved and gains more
knowledge, their decision making will also become more informed.
As a reaction to the lay public’s lack of sufficient knowledge in different subjects,
including biology and genetics, there has been an effort to expand education beyond
high school learning, enabling the lay person to make informed decisions based on a
wider scope of knowledge. This is referred to as Life Long Learning (LLL) and
occurs in any situation, at many stages of life. It includes all formal, non-formal and
informal learning - be it intentional or unanticipated, which occurs at any time across
the individual’s lifespan (Candy et.al., 1994). Life-long learning can also impact our
attitudes and values towards fields with which we are acquainted (Field, 2000). Since
we are flooded with information all the time and we cannot learn all of it at once, it is
an essential challenge for societies to make life-long learning a habit for people to
acquire (Fischer, 2000, Coffield, 2000). This is true in all subjects, especially in those
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that are beneficial to the population, like genetics and genetic testing. In these fields
scientific progress is occurring every day, and by the time today’s students become
parents it may be that standard obstetrics packages will include sequencing the baby’s
genome (Redfield, 2012).
Given the above, life-long learning should be authentic (Ashton, 2010; Hamilton,
2013) and relevant (Hamilton, 2013), especially in the field of genetics (Redfield,
2012), since many families deal with rates of risk for genetic diseases and genetic
dilemmas during the course of their lives. Authentic and relevant long-life learning is
important for informed decision making in the area of genetics, since it would allow
each person to make their own decisions based on firm knowledge according to their
ethnic affiliation, country of origin and the genetic diseases existing in their family.
Relevance of genetic counseling for the young generation in Israel
It has been suggested in the literature that the evaluation of the considerations
influencing decision making in the genetic testing domain should take place at an age
when genetic tests and genetic counseling are relevant and immediate. For example,
Frumkin & Zlotogora (2007) noted that the ideal age for screening a population for
autosomal recessive diseases is before the first pregnancy, at an age in which one can
make mature decisions regarding these tests. In addition, young people are exposed to
current information, which increases their ability to absorb new ideas. The level of
genetic knowledge tends to be inversely proportional to age, and is highest in the 1825 age range (Ashida et al., 2011), the age of most students at universities and
colleges. This therefore seems the most appropriate age to target in order to evaluate
genetic decision making. Undergraduate students are at the appropriate age at which
to take advantage of their genetic knowledge, to weigh the risks, limitations, benefits,
alternatives, and uncertainties, and to implement all these in order to make informed
decisions either immediately or in the near future.
The students in this study belong to the millennial generation, a term that refers to
individuals born between 1982 and 2005, who constitute the newest generation to
enter the workforce. Leaders across disciplines are taking note of the challenges and
opportunities associated with training (as young doctors for example) this generation,
which has grown up highly protected and told by their parents that they are “special”
and “winners”. Eckleberry-Hunt & Tucciarone (2011), for example, examined the
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training of young doctors in the US and found that this generation has been raised on
the values of free expression and accustomed since childhood to the intensive use of
technology. In addition, Twenge (2014), who researched young Americans, found that
some of them see religion as "old-fashioned," and are less committed to religious
rulings, feeling that they have their own personal beliefs to lead them and tell them
what is right. As such, it seems that their responsibility to religious obligations is
lower, while their concern for their own well-being is higher. Although each of these
studies relates to a specific population, of the cultural similarities brought on by
globalization give us sufficient ground to look into the possibility that their findings
may be relevant to our local population as well.
Research questions
According to Creswell (2007) and Yin (2009), research questions guiding case study
inquiry should address ‘how’ and ‘why’ questions so as to better understand the
phenomenon being observed (in Governor, Hall & Jackson, 2013). Our research was
designed to explore the students’ decision making considerations, so our research
questions are:
1. How do Jewish religious Israeli students perceive genetic testing and
counseling?
2. How does the students' religious belief influence their perceptions regarding
genetics?
Methods
Sample
The population in this research included 51 undergraduate students who belong to the
National-Religious sector in Israel. Generally speaking, the Jewish religious
population in Israel is currently highly integrated into secular society (Herman et al.,
2014). Members of religious sector work in all places: in the high-tech industry, in the
army, in the communication system and so on, and see themselves as a part of the
general society, as well as observant followers of religious rules. The participants in
this study came from 3 universities (78% of the students) and 3 colleges throughout
Israel. Forty three percent of them study life sciences and the rest study other subjects
such as sociology, physics, economics etc. Of the interviewees, 49% are women and
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39% are married. The age range of the interviewees is 20-29, with an average age of
23.9. Fifty seven percent of them live in large cities, 22% in medium sized cities and
the rest in small villages or other rural localities. This study was reviewed and
approved by an ethics committee.
What does it mean to be a “National Religious” Jew?
Being a National Religious Jew has everyday implications to one's life. The National
Religious sector is made up of many smaller, tight-knit communities ("kehilot"). The
members of a community attend the same synagogue (a Jewish house of prayer), meet
regularly to celebrate holidays, births, marriages etc., and aid one another at different
stages of life. The community therefore plays a central role in its members' lives, as
do the shared norms, values, and behavioral expectations that come with it.
It is important to note, however, that National Religious communities are not as
physically and culturally separate from Israel's secular society as those of the ultraOrthodox Jews tend to be. This sector usually lives in mixed neighborhoods, unlike
the ultra-Orthodox who live in their own homogenous neighborhoods, separated from
the secular population. The National Religious Jews serve in the military and are
completely involved in all sectors of Israel's working life, unlike the ultra-Orthodox
who usually work in their own community or study Torah (the central reference of the
religious Judaic tradition) while their women go out to work.
One of the most central figures in a National Religious community is its rabbi.
National Religious Jews believe that the Halacha (Jewish Law) should be observed
literally, and the rabbinical authority is therefore very influential in their decision
making in all aspects of life. However, because the National Religious sector is
influenced by rabbinical rulings and by the modern society, the range and diversity
within this sector regarding the degree to which the rabbi should be consulted is very
great. The Rabbi can be consulted about all aspects of life, including number of
children to have, the degree of contraception it is permissible to use, which job to
take, whether and how to conduct genetic tests etc. Some members of this sector, who
have studied the basic rulings or have a lower commitment to the rabbinical ruling,
count on themselves to decide on these and other topics. Others consult their Rabbi on
every controversial topic of their lives, while most lie somewhere in between these
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two extremes. This diversity has led to the formation of sub-sectors among this
community, though they all define themselves as belonging to this same sector.
Belonging to one of these communities sets expectations to its followers in the field of
marriage and having children. While the total fertility rate of the ultra-Orthodox sector
is around 7 children, in the National Religious sector it is about 4 births per woman,
compared to approximately 2 births per woman in the secular sector (Friedlander &
Feldman, 1993). Regarding the age of marriage, in National Religious families the age
of marriage is higher than among the ultra-Orthodox and lower than among the
secular sector. All these issues are discussed daily at the community level, leading to
deliberations on the personal and society levels.
Values and norms in the National Religious sector
Values are known as one of the components that influence the making of choices
between alternative courses of action (Dietz et al., 2005; Kortenkamp& Moore, 2001;
Oreg& Katz-Gerro, 2006; Stern et al., 1999; Stern, 2000). For the purpose of our
study, values are defined as ‘the principles people use to select and justify their
actions and to evaluate people and events.’ The value priorities of individuals are
affected by their social experiences, such as religion, gender, education, occupation,
and cultural background, but are designed by the individual. In turn, values also
influence individuals’ actions in domains such as religion and environment (Schwartz,
1992). The values that are spoken about among the National–Religious Sector, for
example, reflect the duality of their exposure to both a religious and a secular value
system. The principles upon which they rely when addressing issues like genetic
testing and abortions can draw on arguments from both realms; and this duality can
lead to conflict because the religious rulings do not always meet the medical ones.
Values are sets of beliefs used by individuals to guide their behavior. Norms, on the
other hand, are codes of conduct set by a society that dictate that society's guidelines
for "normal," acceptable behavior. A working definition for norms is that they are
expectations about behavior that are at least partially shared by a group of decision
makers (Gibbs 1981; Moch & Seashore, 1981; Thibaut & Kelley 1959). Some norms
are 'social norms,' which are abstract and less definite guides to behavior, but are
shared by all individuals of a group. Others are more 'personal norms,' which are
expectations that people hold for themselves (Schwartz, 1973).
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In the context of this study, the National Religious sector is marked, for instance, by
the norm that marriage is an act for which it is common practice to prepare oneself by
gathering genetic information. Moreover, genetic testing is accepted as a topic that is
open to personal consideration, ambivalence and deliberation. The norms of the
national religious sector allow individuals room to be ambivalent about genetic
testing, and to include their personal inclinations or affinities for the topic - as well as
the consequences of the testing – as factors in the decision making process. Another
important norm that affects the National Religious sector's relationship to the topic of
genetic testing is the individual's responsibility to the family unit. This is reflected in
strong considerations of how genetic information will affect the family – for instance,
to what extent is the individual responsible for notifying the family of a potential
common danger? Alternatively, to what extent is the individual responsible for
protecting the family from the public revelation of information that might put a stigma
on the family as a whole, leading to difficulties for other family members wishing to
marry into other families in the sector?
The qualitative methodology
This study is based on qualitative data gathered by means of in-depth interviews.
Qualitative methods are used to address research questions that require explanation or
understanding of social phenomena and their contexts as well as identifying the
important influences of these contexts (Ritchie & Ornston, 2013). They are suited to
exploring issues that hold some complexity and to studying a process that occurs over
time (Ritchie, 2003). The dilemmas in the field of genetic testing are complex and
socially interconnected. They involve individuals as well as their close and extended
family, and even their wider social circles. Moreover, decision making in this area is
connected to the individual at several stages of life, and might be required of us more
than once during our lives. All these sources of complexity led to the choice of a
qualitative methodology as suitable for this research.
The Research Tool - The Interview
The construction of the interview was based on a review of the literature on decision
making in relation to genetic counseling over the last 15 years (see Table 1). This
review raised four main factors that are deemed most influential in the decision
making process for the field of genetic testing and genetic counseling:
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genetic
knowledge, attitudes and perceptions, religion and ethnicity and the personal factor
(including the emotional factor). In light of these factors, we constructed the interview
to address all these main subjects and their subtopics, so each question relates to one
or more aspects of these 4 main concepts. Since the interview is open ended, the
students can raise a wide range of categories for each question to reflect their
personal, cultural point of view, sometimes far beyond the topics that the question had
been designed to address.
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Table 2: Semi-structured student interview
Note: The letters and numbers in the right hand column refer to the factors influencing decision making that are summarized in Table 1.
For example, factor B4 refers to the major factor B: 'attitudes and perceptions', and to sub-factor no. 4: 'tolerance to uncertainty in genetic testing and the level of reliability,'
and factor D4b refers to the major factor D: 'the personal factor' and sub-factor no. 4:' practical motives', which includes the further sub-category b: 'access to genetic
counseling.'
General Questions:
Decision making factors
addressed by this
question (see Table 1)
1.
Some argue that science is important in our lives. What do you think?
Scientific knowledge
2.
Do you think that science gives us definitive answers following its research? Is there a difficulty with this (according to your answer)?
Scientific knowledge; B4
3.
What does the term genetics mean to you?
A1
4.
Do you think genetics relates to you personally?
A2; A5
5.
When do you think genetics can be useful for you during your life?
B3
6.
Are you acquainted with the field of genetic counseling? (If not, the interviewer explains what it is).
A3; D4b; D1
7.
Today it is possible to make a variety of genetic tests before and during pregnancy. Do you think one should take maximum genetic tests to rule
B4; A6; A7; D4a; C2
out fetal diseases?
8.
Is there a particular test you would like to take for your own child during or before pregnancy?
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D1; D4c
9.
Do you understand why people prefer not to receive genetic information?
D7a; D6; B2
10. There are people who are afraid of genetic information. What do you feel about that information?
D7a; D7b
11. Are there any genetic issues that you take into consideration when you choose (or have chosen) a mate?
D5; A6
12. Do you know people who take genetic considerations into account when choosing a mate? Can you understand this approach?
D3
Case 1: Rachel comes to a genetic counseling session during her first pregnancy. During the consultation session she confesses that she has a mentally retarded brother. She was always
told by her family that her brother's birth occurred with an abnormal supply of oxygen, and therefore he was mentally retarded. Rachel is interested in doing all possible genetic tests to
determine whether her fetus has a risk of mental retardation, but does not want her family to be aware of the genetic testing she is conducting. She has brothers and sisters who do not
have children yet and she is aware of the fact that not only her parents but also her brothers and sisters might be carriers of the gene for mental retardation. She does not want to share
the fact that she has performed genetic tests, and what their results were. She is tested and found to be a carrier of a gene that causes mental retardation. Happily, her fetus is tested and
found to be normal.
1.
In your opinion, what ethical questions arise from this case?
C3; B5
2.
What considerations and dilemmas can rise from this case, assuming we know that the syndrome causes inherited mental retardation?
Case 2: Huntington's disease is a genetic disease caused by a dominant gene mutation. Symptoms of the disease usually begin in adults from the age of 40. Until then there are no signs
of illness. The disease is fatal after a period of suffering.
1.
Do you think every child should be checked for this disease as soon as he is born? What is your dilemma?
B4
2.
Assuming the disease exists in a family, do you think the fetus should be checked even if the test itself imperils the pregnancy?
B5
3.
Do you agree that it is better the person does not know if he has the gene for this disease?
D7c; C1
Case 3: Some kinds of deafness have been found to be caused by mutations. Nowadays it is possible to examine a fetus prenatally for mutations that cause deafness.
1.
If you find in genetic testing that your fetus would be deaf, do you think you should have an abortion?
B5
2.
Do you think that you should check the genes for deafness and allow the family to cope with the information?
C1; D2
3.
Do you think the state should fund research that deals with diseases such as deafness, which do not cause death?
D4a
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Case 4: Nowadays, researchers use an in vitro procedure called Pre-implantation Genetic Diagnosis (PGD) to test embryos for inherited diseases that exist in the family before they are
introduced into their mother's womb. In this method, only the healthy embryos will be implanted into the mother's womb.
1.
Do you think this test has future ethical dangers?
C3
2.
Do you think the ethics committee of the hospital is competent to decide whether to carry out these tests rather than individual?
A4; A6
Case 5: Thanks to genetic research early detection of genetic diseases is now possible.
1.
Assuming there is no treatment for the disease; do you want to be tested for the genetic disease?
A6; A7
2.
Would you inform your family about genetic test results that you have done?
A4; A5; B1
3.
Would you want a genetic survey to inform you that you are at risk for a genetic disease?
D7c; A5
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A list of the interview questions, and an indication of how each question relates to the
factors in the literature review, is provided in Table 2. The table is divided into two
sides. The right side shows the interview questions while the left states the concept to
which the research question relates. The concepts are taken from Table 1, which
details the literature-based list of factors influencing decision making in the field of
genetic testing. For example, Table 2 states that question number 3 relates to the
concept “A1,” which, as Table 1 shows, refers to the first component (1) of the first
determining factor (A), or in other words, the concept 'explicit knowledge acquired,'
which is part of the 'genetic knowledge' factor of the decision making process.
The use of individual interviews provided an opportunity for detailed investigation of
people's personal perspectives and context (Lewis & McNaughton Nicholls, 2013;
Patton, 2005; Ritchie, 2003). We used a standardized open-ended interview because
we wanted to minimize the variation between the different interviewees (Patton,
2005). In addition, the interviewer, like the interviewees, is a member of the NationalReligious sector, and is therefore personally attuned to the sensitivities and nuances in
the students’ words. This also contributed a measure of identification between
interviewees and interviewer, allowing the interviewees to feel free to speak in terms
the interviewer would understand.
The students volunteered to be interviewed after we advertised on the notice boards of
their institution that we are looking for religious students for an interview on genetic
issues. The interviews were held during the 2013 academic year, and the students
were told that the interview is confidential and that its findings would be used for
research purposes only. Each interview lasted 45-50 minutes, and took place in a quiet
place at the university, for the students’ convenience.
We decided to interview a large amount of students, since we wanted a sample of both
genders as well as a sample of different domains of study and different marital status.
We wanted to grasp the complexity of decision making in the genetic domain, but also
maintain a comparison between the different groups, which we would not be able to
do if we had interviewed fewer students. We continued interviewing more participants
so long as we were getting different answers (Baker & Edwards, 2012).
After
conducting 51 interviews, we reached a point in which we sensed, as suggested by
Baker & Edwards (2012), that we had encountered a sufficient amount of repetition
with which to confidently make analytical generalizations.
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Data Analysis
The analysis was conducted in stages. First we conducted a “thematic analysis”
(Boyatzis, 1998; Dey, 1999) in order to obtain the main themes that arose from the
answers. The second stage was obtaining the codes from the thematic analysis. This
was done according to “grounded theory” analysis (Corbin & Strauss, 2008; Glaser &
Strauss, 1967), taking into account our literature review while coding the replies
according to codes that were modified until saturation. The third stage started with our
reflective process. After we had conducted a few interviews, we came to see some of
the codes differently, and realized that some categories should be added. This resulted
in another code refinement for all the interviews, followed by a peer and auditor
debriefing. The codes were validated by peers that were involved in the research and
by external researchers (Creswell & Miller, 2000), and based on the validation
process the codes were refined again. In the fourth stage we refined the codes (a total
of 67), and produced the final categories. We then proceeded to recode all the
interviews according to the new code scheme using ATLAS-ti, the Qualitative Data
Analysis & Research Software.
"ATLAS.ti offers myriad analytic tools that allow the researcher to quantify
qualitative information through coding, data query, cross‐tabulation, and networked
visualization of project design" (Scales, 2013). Most of the interviews were used in
ATLAS.ti as audio files. ATLAS.ti can code segments, integrate material, attach notes
and find them again, count the number of codes and more; all this makes it much
easier to analyze data systematically, while doing so manually would have been much
more time consuming and less accurate (Friese, 2014).
In accordance with the qualitative grounded theory approach, our goal was to enable
the respondent's voice to be heard (Kvale, 1996) and not to force our pre-existing
categories. After listening to and transcribing the interviews, we conducted a line by
line detailed microanalysis coding process in order to generate initial categories
(Devers & Frankel, 2000). The analysis produced three groups of primary categories,
which together add up to the factors influencing the decision making process of the
Israeli religious student in the domain of genetic testing. The codes were grouped into
sub categories, and these were grouped once again to three main categories:
knowledge, perceptions and attitudes towards genetic testing (Figure 1) norms (Figure
2) and values (Figure 3).
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Figure 1: The knowledge and perception category tree
126
Figure 2: The norms category tree
127
Figure 3: The values category tree
Each category tree is divided into a several major categories and their respective subcategories. The knowledge and perception tree (Figure 1) includes the 3 major
categories: 1)"Perceptions towards science in general" (included the sub-categories,
"perceptions regarding what science does" and "criticism towards science"). 2)
"Knowledge and understanding of genetics" (included "perceptions regarding what
genetics is" and "perceptions regarding the practical applications of genetics").
3)"Factors involved in decisions to undergo/ act upon genetic testing" (included five
sub categories, among them "consequences of raising a sick child," "reference to the
severity of the genetic disease" and "perception of risk").
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The norms tree (Figure 2) includes 4 major categories. The first, "Genetic preparation
for marriage," included genetic preparation both with and without the "Dor Yesharim"
program. The second and third categories ("adapting genetic testing to what is
acceptable in the community" and "individual responsibility towards the family")
reflected the influence of the individuals' relations with their religious community and
with their family on their decision making. The fourth and largest category, "genetic
testing is open to personal consideration, ambivalence and deliberation" reflected the
range of personal thoughts and feelings that, in their recurrence, seemed to be an
acceptable and "normal" part of the interviewees' decision making process. This
category included an acknowledgement that various aspects of this topic could be
seen as sources of ambivalence; it also included an awareness of the personal impact
of decisions in this field, as reflected in the importance of "personal inclination to
undergo testing" and the "personal consequences of genetic testing."
The values tree (Figure 3) includes 4 major categories, which together reflect the dual
presence of both religious and secular values in the National Religious students' lives.
The first two categories reflect the students' "Philosophical religious considerations"
(such as the religious arguments in the for and against humanity's intervention in
nature) and their "practical religious considerations" (including "relying on religious
doctrine as a guide in decisions relating to genetic testing and procedures"). The third
and fourth categories reflect the students' more secular value set. This is divided into
"'universal' ethical considerations" (like basing the termination of a pregnancy on
criteria like the severity of disease, or basing one's attitude towards genetic testing on
whether or not it constitutes a " slippery slope"), and "considerations based on 'rights'”
(like the "rights of the family" and "the right of life").
Each of the sub-categories in the category trees unites several codes that emerged
from the students' interviews. Using the Atlas software, we counted the number of
students that mentioned each code during the interview. The numbers beside each
code represent the percentage of students who mentioned it during their interview.
Validation and reliability
During the data collection we made an effort to maintain analysis reflexivity - to be as
sensitive as possible to the ways in which we collected data and to minimize any bias
due to prior assumptions or experience. As Mays & Pope (2000) advised, personal
129
and intellectual biases were made plain at the outset of the research report to enhance
the credibility of the findings. Since every researcher interprets the data according to
their own subjective perspective, content validation was done with the aid a few
experts from different areas of expertise, so as to capture as wide a view as possible
while defining the final codes (Elo & Kyngäs, 2008). These included two specialists
in genetics and in science education and a researcher from the science education field,
all with extensive experience in qualitative analysis. In addition, as Graneheim &
Lundman (2004) have suggested, a dialogue took place between the researchers to
agree on the way in which the data is categorized. This procedure took place twice, in
two rounds, to assure the accuracy of the categorization.
Results
Our main findings are organized in the three category trees (Figures 1-3) from which
we have derived most of our results. The trees raise insights as to the issues that
concern, interest or trouble the students, all of which influence their considerations
while making decisions regarding genetic counseling and genetic testing. The result
analysis shall be divided into two parts: the first will deal with the complex decision
making and considerations of the students as a whole, in which we shall lay out three
main claims that we have formulated in light of our findings. The second part will
focus on 3 of the students for which faith is a central value, showing the complexity of
their concerns and addressing the diversity of the students that belong to this subsector. Throughout the results section the quotations from the interviews will be
followed by the students' code, their field of study and their age.
The first claim we shall try to demonstrate in our portrayal of the students as a whole
is that Israeli religious undergraduate students, despite their adherence to the rules and
traditions of a religious way of life, are - in their approach to issues of genetic testing ultimately very close to what might be broadly characterized as ‘Western’ thought, in
the sense that they show a considerably high level of trust in science and in scientific
innovations. Our findings showed that, at least when it comes to this particular
context, science is an integral part of these students’ lives, while their commitment to
family and religious society is a less significant influence. In addition, the
participants’ desire for a healthy child comes across strongly as a central concern.
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Nearly all of the students we interviewed agreed that science contributes to the
world's development (96.1%) and that science explores things that help society
(84.3%) (see Figure 1, perceptions towards science in general, perceptions regarding
what science does). Their knowledge comes from diverse sources such as television,
radio and the internet, as indicated by responses like, "Science can improve quality of
life. I heard yesterday on the radio that there was a breakthrough cure for cancer.
Research in science helps people” (PL, education, 23). Moreover, the students’ belief
in the benefits of science is not limited to the field of medicine: "the world is nurtured
by science also in the field of communication, transportation” (YN, accounting, 25).
The interviews suggest that these students’ opinions are guided by a belief in
scientific progress and a liberal, ‘Western’ sense of morality, and not necessarily by
religious considerations. This argument is supported, for example, by the fact that
students refer to the “slippery slope of genetic testing” argument as a universal moral
issue rather than as a religious concern: "you shouldn't enable the public to check
anything they want (in genetic testing) since it can lead to checking eye and hair
color. That's not ethical, it's like making an army of robots” (SA, biology, 25). The
same is true of the opinions they expressed regarding the universal right of the
disabled to live in society.
The claim that the students were more strongly influenced on this issue by ‘Western’
considerations than by traditional or religious ones was further supported in the
“norms” category tree (Figure 2), which showed that most of the students (80.4%)
think that genetic background is not a relevant factor in choosing a mate (Figure 2,
genetic preparation for marriage, looking into the partner's genetic background). It is
worth noting here that in the Israeli religious population it is very common to find a
spouse with the aid of a matchmaker. In addition, the Ultra-Religious population is a
very closed one, and therefore this population is very concerned about recessive
genetic diseases for which they understand that they are at greater risk. As such, the
Ultra-Religious community and part of the National-Religious sector choose partners
for marriage according (in part) to genetic criteria.
In the National Religious sector, the issue of choosing a mate is not just a personal
issue belonging only to the individual. Its social aspects include the potential
involvement of the rest of the individual's family and other members of the
community in the decision making process, which makes it part of the "norms"
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category tree. Nevertheless, it seems that the religious students that we interviewed
think that their choice of mate should be based on personal preference, rather than on
the prospective partner’s ethnicity, community or genetic history. They speak about
love and the personal connection as central concerns: "There is a test that checks a
genetic match and begins to make a match, but we do not do these tests because if I
meet a guy (randomly) no matter what the tests say I will be with him. The tests don't
affect my partner selection” (LH, mechanical engineering, 21). LH is referring to the
genetic tests done in the ultra-Religious sector prior to marriage (the "Dor Yesharim"
program). Only 25.9% of the students (Figure 2, genetic preparation for marriage,
going to "Dor Yesharim") accept the ideology of this program as suitable for the
National Religious society to which all these students belong. Not all of these 25%
will even conduct these tests. The students therefore represent a generation for which
personal well-being is more important than their society’s expectations or norms.
Despite their seeming faith in science, however, the students’ level of genetic
knowledge is not high enough to allow them to make informed decisions in the
domain of genetic testing. For example, one student claimed that "a genetic disease
will come if two of the parents are from Eastern Europe” (NG, geology, 24).
Misconceptions like this one reveal a fundamental misunderstanding of the potential
we all have to carry a genetic disease. A fair percentage of the students (62.8%) have
some knowledge concerning the uses of genetic methods (see Figure 1, knowledge
and understanding of genetics) and some of the basic principles of genetics were
known to a relatively low percentage of students (Figure 1, 'genetics is the human rule
book' (47.1%) and 'genes determine but people can change their destiny' (43.1%)).
Insufficient knowledge of this sort leads to uninformed decisions, as reflected by the
fact that only half of the students (54.9%) see the family history of genetic disease as
relevant (Figure 1, factors involved in decisions to undergo act upon genetic testing,
perception of risk ).
The lack of knowledge is also reflected in the fact that only half of the students
expressed a desire to conduct genetic testing before marriage (Figure 2, genetic testing
is open to personal consideration, personal inclination to undergo genetic testing).
While some expressed sentiments like: "It suits me. We did genetic tests before we got
married and before we had children” (YD, computational biology, 27). Others did not
understand the importance of these aspects as measures to prevent and discover
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genetic diseases: "I think it's unnecessary to examine everything. All this area is new.
Everything was fine until now so let's let life to flow and it will be okay" (LC, Hebrew
literature, 22).
Furthermore, 43% of the students expressed criticism towards the number of genetic
tests performed, criticism that might lead to failure in the informed decision making
process (Figure 1, factors involved in decisions to undergo genetic testing, lack of
faith in genetic testing): "I don't think that people should spend so much money on
genetic tests and then they will be told that something is wrong…leave space for God.
We do not know everything, and we don't need to know everything. There have been
enough cases when doctors said things that were not true. Do not trust science” (ST,
special education, 21). This suggests that although the students do reflect the strong
influence of modernization and Westernization, their lack of sufficient genetic
knowledge and their criticism towards genetic testing limits their trust in scientificgenetic innovations.
This second claim that arises from our findings is that this population of students –
despite its adherence to the laws and traditions of religious life - still reflects the
characteristics that have been associated with the “millennial generation,” which
refers to children born in the ‘80s and ‘90s. This generation is characterized by
individuals who have been exposed to technology from a young age. Moreover, it
consists of people who are accustomed to caring about and prioritizing their own wellbeing, but who are also concerned with social rights. This claim can be demonstrated
by the students’ values (Figure 3), which focus on rights - like the right to choose not
to know ones' genetic profile (84.3%), the right for privacy of information versus the
rights of the family to know (74.5%) and the rights of the family decide what tests and
actions to take (84%), "there are diseases that are a torture that ... you must avoid,
torture for your own child and for the family, I think if you can avoid it in advance…
it is your right to do it” (RN, biomedical engineering, 23 ). The students also referred
to the rights of the fetus, and displayed a reluctance to conduct genetic testing that
endangers it (Figure 3, practical religious considerations, 56.9%). For instance, RN
said, "Before pregnancy I am in favor of testing, but during it is very
problematic…because even if the fetus had a genetic defect, it has the right to live”.
This sentiment was echoed by other students, for example: "If someone thinks she isn't
going to do anything with the fetus test results, she shouldn't do the genetic testing for
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the fetus. It's needless, because she probably wants to keep the fetus' right to live"
(LH, mechanical engineering, 21). These elaborations describe the fetus as an entity
with rights, whose right to live should be carefully considered.
Another characteristic of the millennial generation, which has been exposed to science
and technology from a young age and therefore understands the importance of
collecting all the information in order to make decisions, is their need to check the
scientific details regarding the genetic disease, including what the treatment options
for the disease are (Figure 1, factors involved in decisions to undergo/ act upon
genetic testing, perception of risk, 76.5%). This student, for example, sees the
decision to test for a genetic disease as conditional, explaining that the choice
"depends [on] if there is anything to do with it. If there is some way to heal the
disease" (YD, computational biology, 27).
The will to know in order to avoid
uncertainty is part of the broad knowledge base that a millennial student wants to have
in order to make decisions: "On the one hand, one's medical information is very
confidential, but on the other hand, if you supply that information (to your family) you
can prevent a person from suffering in the first place, and I think it's very problematic
not to have all your genetic information” (AC, medicine, 26).
In addition to their desire to have all the genetic information, the students also
reflected a millennial concern for their own well-being in the fact that they addressed
the economic aspect of genetic testing and of raising a sick child. They realize that
one’s economic situation is a crucial factor in well-being, as is the financial and
mental strength required to deal with a sick child. "There are diseases that I think I
would choose to have an abortion for, because I think I won't be able to deal with the
serious illness of the child” (SV, biology and social work, 23). SV expresses the fact
that not every person is able to deal with raising a child with special needs, since it
requires special traits that not everyone possesses.
The students’ concern about their well-being was also reflected when the students
were asked to explicitly state their readiness to perform genetic procedures. More than
half of them (56.9%) thus expressed ambivalence about whether to conduct genetic
testing and genetic procedures (Figure 2, genetic testing is open to personal
consideration, ambivalence and deliberation, genetic testing as a source of
ambivalence). These hesitations were usually not based on religious grounds, but
rather on fear, stress and concern about the stigma that genetic information might
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create (Figure 2, genetic testing is open to personal consideration, ambivalence and
deliberation, the positive/negative personal consequences of genetic testing). One
student said, "Some people are afraid that they will not be considered as good
because of their genetic background. For example, I do not want to marry that person
because of his genetic condition” (MR, biology and education, 20). Other students
noted that the genetic knowledge itself could be a source of fear, suggesting that fear
of dealing with the complex situation might lead them to prefer not to know at all:
"First of all there is the fear of knowing. If a couple wants to get married and goes to
genetic counseling and they will be told that there is a problem in terms of genetic
match and there is a high chance that their children will have a problem, the couple
faces a difficult dilemma” (YN, accounting, 25).
In some cases, the students’ doubtful and critical stance towards genetic testing
reflects their lack of understanding of its essence. One said, "It doesn't relate to me
(genetic diseases), since I feel that among my community, I am Moroccan, it's less
common. The chance for genetic diseases is low, so we didn't go to do genetic testing”
(AG, psychology, 26). AG, like others, has the misconception that genetic diseases are
common only in certain ethnic groups. He does not understand that different genetic
diseases are characteristic of different communities. This misconception might lead to
problematic decision making, since it does not take all the genetic possibilities into
consideration.
Until now we have focused on the students’ “Western” and “non-religious”
considerations, but our interviews clearly show that these were not the only aspects of
the students to come up. In addition to the points of similarity that they may share
with their more secular counterparts, the students in our study also conveyed a
significant connection to faith and to religious considerations, which emerged as
influential aspects of their decision making.
The third claim we shall consider is therefore that although only a third of the
students (Figure 3, philosophical religious considerations, priority for religiosity,
35.3%) mentioned faith as a central value in their life, for this sub-group religious
belief is a significant guiding factor. This means that although these religious students
resemble the more secular elements of Israeli society in several important ways, they
also have unique features that characterize them as religious. The findings also
suggest that even among the 65% of the students who did not claim faith as a central
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value in their lives, 79% did mention some practical religious explanations and 67%
used philosophical religious explanations in their interview. This use of religion to
explain their decision making suggests that their concerns are also often related to
religious explanations, even though these are not always explicitly mentioned in the
context of faith as central to their lives. In other words, the students mention the
components of their faith without mentioning the faith itself.
The presence of religion as an influence in the students' decision making process is
also reflected in their elaborations and explanations, in which 31% of the students
admit that they would make their decision regarding genetic testing only after
consulting a rabbi or rabbinical ruling (Figure 3, practical religious explanations,
relying on religious doctrine as a guide in decisions relating to genetic testing and
procedures). This is made clear, for instance, in the following dialogue:
"Interviewer: Today it is possible to do a variety of genetic tests before and during
pregnancy. What do you think about the genetic tests that can be done during a
pregnancy?
SZ: I think it's good so that you know where you stand, what you can do, but… on the
other hand it depends which tests…. For diseases?
Interviewer: Yes.
SZ: I think it's good, especially in cases when you can prevent a disease, but… I don't
know if I'll do these tests.
Interviewer: If you think it's good, why aren't you sure you'll do the tests?
SZ: Because there are things that you cannot do anything about. I think what I will do
is much consultation with my Rabbi. I have heard a lot of stories about people that
did the tests and in the end everything was fine and I believe in these things, really. It
depends on my community, if we do these tests, and what the rabbi says."
SZ (bioengineering, 23) clearly admits that in order to make decisions while pregnant
she will definitely consult her Rabbi and not make any decision otherwise. She
understands the importance and the consequences of genetic testing, but is not willing
to conduct them during pregnancy without getting confirmation from a rabbinical
authority.
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Some of the students clearly declared that their religious faith would directly affect
the decision they would make, and that they would subordinate their personal
preferences to what they perceived to be the will of God. This was clear from detailed
answers like this one: "If it's already there (the fetus) there is nothing to do with it. If
it's there it's there. If I was allowed to have an abortion I would like to, but it's not
ethical to have an abortion. You can't decide that you don't feel like raising this child.
If it happens to you then that's probably what God wanted. But if not speaking about
God, then I would want to do have an abortion. If that's what God gave you so that's
what it should be. It's very selfish to have an abortion. You want the good life. You
don't want a child to need you all the time (BF, industrial engineering and
management, 24). It was equally clear, however, from such shorter examples, like:
"Leave room for God. We do not know everything and we do not need to know
everything. We should believe” (ST, special education, 23). Examples like these
reinforce our impression that for some of the students the belief in God overrides the
desire to know more or to prioritize their own lives over that of the fetus; their faith,
as they perceive it, does not allow them to rely only on their own will, but requires
them to rely primarily on “God’s plan.”
These religious considerations were involved most prominently (43.1%) in the
decision whether or not to have an abortion (Figure 3, practical religious explanations,
relying on religious doctrine as a guide in decisions relating to genetic testing and
procedures), an area in which students seek "outside" help to make a decision
regarding this controversial subject. One student told us: "what would I do if I have a
fetus with a genetic defect? I would ask my Rabbi. It's too big for me to decide
whether to have an abortion in the case of deafness. I don't know how to handle it”
(RM, biology, 21).
They were also raised in connection to intervention in nature, though the students’
faith did not always lead them to similar conclusions (Figure 3, philosophical
religious explanations). For example, 33.3% of the students were in favor of
intervention in nature as part of their religious view. One said: "I think that it should
be a convention to do genetic tests. Maybe this is a liberal approach, but God gave us
technology and science to use it and not to be afraid of it or to rely on miracles” (AI,
physics, 27). On the other hand, 51% of the students were against interference in
God’s creation, claiming that genetic procedures that interfere with the natural course
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of the world were not allowed or not needed. These expressed opinions like: "I think
that our limit as human beings is diseases that we can deal with. We should not
interfere with the creation of God” (SA, biology, 25), or "Having an abortion for a
deaf fetus is to get into the place of playing God. I worked a bit with deaf people. It's
very difficult, but still, to abort? I don't think so” (PL, education, 23). The
interference in God's creation seems to these students inappropriate, and is
inconsistent with their values.
In conclusion, our results raised three main claims. First of all, the religious Israeli
students in this study are very close to what might be termed “Western” mentality;
they trust science, and it is a central part of their lives. Secondly, the students
displayed traits associated with the “millennial generation” into which they were born
– a generation of individuals that have been taught to prioritize their own well-being
and be concerned about their rights. Third, though faith was noted as a central factor
by only part of the students, for that part belief is a highly significant factor and the
religious considerations of those particular students are certainly an influential part of
their decision making in the domain of genetic testing.
An in-depth look at three students' religious worldview
After considering these three claims, we must admit that the qualitative study of 51
students is not fully reflected in them. Each of the students in the study ultimately
represents a separate story, and each interview provided us with an entire narrative of
that student's world view.
We therefore also wish to supplement our general
conclusions with the personal stories of three students, each of whom represented
religion from a different perspective. We realized that we cannot simply relate to all
of the religious students in our population as a homogenous whole, since each of them
has their own personal perspective, influenced by their prior studies, the customs of
their family and community, and by their own personality. In this variety, we can
nevertheless distinguish three “types” in the relationship between religious
commitment and genetic decision making. While, as we have noted, the students who
did not mention faith as a central value also revealed religiously centered claims, we
have nevertheless concentrated on the subgroup of students that did mention faith as a
central value, looking more closely at the subtleties of their different outlooks.
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Type 1: The religious ideologist
ZG (23), an unmarried physics student at a university, has a very firm religious
ideology. He is a theological thinker, not willing to compromise when a religious
value clashes with a scientific one. He is not willing to accept any scientific
innovations, especially if these do not align with his beliefs about religious rules.
Though many Rabbis have offered halachic rulings that have been updated according
to scientific improvements, ZG is not willing to consider them as an option. He told
us that:
"If you have a defective gene in the embryo, an abortion is forbidden religiously. But
if I was not religious, I would permit the parents make the decision as to whether to
have the baby or not until the soul enters the body of the child. But because I'm
religious I can say that I oppose abortion. If the soul has already entered the body of
the child, then no abortion can be done under any circumstances, even if it endangers
the mother."
ZG takes an extreme view of Jewish law, showing no interest in negotiating and
taking the medical situation into account: "Genetics has given rise to possibilities that
contradict moral principles. If the mother knows her child is born deaf and mute, who
said that she is allowed to end his life? And if a person is born retarded, who says
that this child wants to die? Who gave you right kill this child? It is totally forbidden
by Jewish law." His approach does not leave space for individuals to decide such
things for themselves at all. It is an approach completely ruled by God's written rules.
Type 2: The informed yet religiously oriented social conformist
PL (23), an unmarried teacher training college student, thinks emotionally. She wants
to please the social and familial system in which she lives. She does not think of her
own interests, but of what is in line with the expectations of her family, as reflected by
statements like "My mother told me that she does not agree that I continue dating with
this guy before I go to do genetic tests." PL is willing to accept the social system she
belongs to and what is customary in it indisputably, openly claiming: "I think that the
opinion of the private person regarding termination and the implications of genetic
testing should not be considered, if someone has to decide it is a Rabbi."
This denial of individual will has caused PL to pay a personal price for her religious
beliefs and her willingness to obey rabbinical expectations. She and her boyfriend
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checked their genetic suitability by means of "Dor Yesharim" tests and were told that
they are both carriers of a recessive genetic disorder. She decided to part from her
boyfriend, as "Dor Yesharim" recommended. It was a very difficult step to take as the
relationship with her boyfriend had been serious, yet she did not want to continue the
relationship and get married since it would mean risking every future fetus by taking a
genetic test during her pregnancies.
Importantly, her commitment to her religion and her community is accompanied by a
sincere readiness to be exposed to what science has to say in these fields. She told us:
"I called 'Puah Institute' [deals with counseling, guidance and assistance to couples
who have gynecology and infertility problems] and asked them what options there are
if we are both carriers of a recessive disease. I also investigated and found that there
is genetic counseling in hospitals and even telephone counseling, which is free."
Nevertheless, her commitment to her faith outweighs her trust in science: "The fact
that I am religious, a believer, is very influential. If I was secular I would look at
more data and statistics. But as a religious person I don't think everything has to be
checked… I really believe in God, it's something very significant in my life. For
example the whole thing I had (the separation from the boyfriend), at first it was very
difficult and I said - I might transfer the disease to my children…but I believe that
everything is from God. Maybe I'll marry a normal person [i.e. someone who is not
also a carrier]."
PL's interview reflects her firm faith in God, her willingness to obey the family rules
regarding genetic testing even if these imply she must make personal sacrifices, her
willingness to entertain information from scientific research and her belief that
science has its limitations. Her priorities are very clear: "I have faith in God, he plans
everything, even before the genetics, and I have faith that prayer can change any
decree." Her attitude towards genetic testing that can risk the fetus is unambiguous,
and accompanied by a tendency to be critical of the medical genetic system: "The tests
that endanger the fetus should not be done. I heard that amniocentesis can endanger
the fetus. Why do it? There are lots of things that are checked and they tell you for
example it would be a boy or girl and eventually the opposite sex is born. There are
things that don't need to be checked. We don't need to know everything. Not
everything is in our control anyway."
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Type 3: The religious rationalist
DR (25), an unmarried medical student, shows a firm religious approach, yet it is
clear that scientific and medical discoveries are part of his religious worldview. He is
a rationalistic thinker who believes that science is consistent with religion and seeks
for the connection between them. "There is a religious view that says that what God
wants is what will be, and who am I to interfere in his decisions? I understand where
this view comes from but I don't agree with it. I think that science is religiously
blessed. Should we not use cars? I strongly believe in genetic tests and I will do them
when it becomes relevant."
DR believes that genetics is a central part of our life, but that according to the Jewish
religion we can improve our life quality even though our genetics determine many of
our features: "Your genetics is your fate. Many things that will influence your future
are because of your genetics. These are things that apparently can't be changed, but
according to religion, there is always an option to change, like in the case of health,
you can be healthier if you eat differently and do sports."
DR proclaims that his religious opinions are more liberal when speaking about
abortions, and he is not willing to accept a sick child at any price: "One should know
to expect as much as possible in order to prepare oneself and if necessary end the
pregnancy. There is a law in Israel that if Down syndrome is diagnosed even a week
before birth there is no problem to abort. On this issue I'm a bit more liberal,
religiously open. I don't think that you should bring life at any cost. I see people who
have genetic problems, it changes their lives." He expresses a more complex approach
to the relationship between religion and genetic testing, taking a wider range of
considerations into account.
The three students above represent three types of religious approaches to dealing with
genetic decision making. The first type is represented by ZG, who is not willing to
hear anything other than Jewish law. He feels committed to the most extreme views of
Judaism. He is willing to hear only scientific and religious issues that meet his radical
views. The second, PL, is a type that on the one hand is willing to make a personal
sacrifice in view of her obligation to Jewish law, but on the other is prepared to be
exposed to scientific information and actions, even though she is sometimes critical
towards them. Moreover, PL is committed to her family and community and lives
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according their expectations, ready to give up her personal wishes. The third type is
DR, a student who understands the complexity of science and faith and takes into
consideration both Jewish laws and scientific recommendations in his decision
making. He is a rationalist thinker, looking for a match between science and his
religious views.
Discussion
The goal of this study was to probe the decision making considerations of Israeli
undergraduate students in the field of genetic testing and genetic counseling. Our
study is a cultural one, designed to capture the students' complex thoughts, dilemmas
and deliberations through in-depth interviews. Our interviewees all defined
themselves as religious, belonging to the National-Religious sector in Israel. They
study in diverse faculties at different higher education institutes throughout Israel and
half of them are women.
Our results produced a complex picture of the numerous factors that affect this type of
decision making. In order to achieve a comprehensive view of that picture that would
enable us to see the similarities between different students and to project our
conclusions to other students as well, we created the Triple C model: "Culture
influences Choices towards genetic Counseling" (Figure 4).
Our model places
religion, which is part of culture, as a central aspect of influence on our three main
categories of 'knowledge and perceptions', 'norms,' 'values'. These categories serve as
the three vertexes of our model, since they are influential factors in genetic decision
making, as shown in the results section.
We shall start each part of our discussion by defining one of these three vertexes, and
then look into the mechanism that explains the interaction between that vertex and
religion. These three main categories are also influenced by one another, and their
mutual influence will also be addressed in the discussion. The impact of religion on
each of these main categories lies in the center of the model, with a condensed
description of the link between them in italics both in the model and in the following
descriptive text. Sub categories from the three category trees (figures 2-4) will also be
addressed throughout the discussion.
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Figure 4: The Triple C Model: Culture influences Choices towards genetic
Counseling.
The first main category connected to religion in the triple C model is norms. Norms
are developed in the process of socialization. Each community contains knowledge of
what counts as “correct” or “appropriate” behavior, which constitutes that
community’s shared norms (Schäffner, 1999 ; Svensson, 2013). Therefore, in our
model, religion creates expectations as to the norms to which a person who belongs to
a religious society should conform. These expectations pertain to many aspects of the
religious person's daily life. For example, previous studies have noted the
expectations religious authorities have from their followers on issues like accepting or
rejecting organ donation (Stephenson et al., 2008) or alcohol consumption (Neighbors
et al., 2013). Others have found positive relationships between the importance of
religion or religious faith and the perceived influence of religious factors on one's
choice of occupation, decision about whether or whom to marry, etc. (Sigalow, Shain
& Bergey, 2012). Such expectations can extend to decisions about genetic testing as
well.
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Religious expectations in the genetic field reflect the community's norms regarding
the performance of the genetic tests, with some communities expecting testing more
or less than others. Moreover, the genetic preparation for marriage and the use of
"Dor Yesharim" genetic tests is a norm that is accepted to varying degrees in different
parts of the National Religious sector. Norms shared by the community might lead to
fear of going through genetic procedures that are not acceptable in the society one
belongs to, leading to conflicts and deliberations about whether to conduct genetic
procedures or genetic testing.
Values, our second main category, refer to the principles that people use to select and
justify their actions and to evaluate people and events. The value priorities of
individuals are affected by their social experiences, such as religion, gender,
education, occupation, and cultural background (Schwartz, 1992). In the genetic
counseling field, as in other fields of western health care, there are four principles that
guide the values and practice of the medical service: (1) autonomy - which involves
respecting an individual’s intrinsic right and capacity to think, make decisions and
take actions based on their values and beliefs (Gillon, 1986), (2) minimizing harm, (3)
promoting benefits and well-being, and finally (4) the principle of justice, which
involves promoting care that is fair, equitable and appropriate (Hawkins, & Ho,
2012).
As this research concentrates on religion as part of culture, we comprehend that
religion shapes the moral world view of the students, thereby influencing their
perspective towards issues in genetics. For instance, patients have been found to be
unwilling to cooperate in genetic procedures because of religious beliefs, stating that
scientists are “playing God" or expressing fears that human genetic research and
genetic technologies are being used inappropriately (Harris, Parrott & Dorgan, 2004).
The meaning of these findings is that religious values are central to the involvement
and acceptance of genetic counseling, as indicated in our own study, in which
philosophical religious considerations such as: "I am against interference in the
creation of God" and "religion conflicts with science" were noted.
In the field of abortions, religious factors have been shown to influence values related
to abortion policies (Ellison, Echevarria & Smith, 2005; Emerson, 1996). This was
also reflected in our model, where students declared that religious doctrine would
guide their decisions on such issues, stating: "I will terminate the pregnancy or not
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depending on religious considerations." This reliance on doctrine and rabbinical
guidance extended to other aspects of genetic decision making too, indicating that the
students' values, as reflected in their world view, are affected by their religion, which
thus influences their considerations in the genetic domain.
The third main factor influenced by religion is the students' knowledge and
perceptions. This factor includes attitudes and perceptions towards scientific and
genetic issues as well as knowledge and criticism of scientific and genetic issues. For
example, perceptions towards genetic counseling include recollections and
interpretations of the genetic risk and the likelihood that the genetic disease in the
family is heritable (Vos et al., 2012). People are more likely to make use of genetic
counseling when they feel that counseling has helped them feel more educated about
genetics in general and has improved their understanding of their own genetic results
(Darst et al., 2013). In our model, the students’ criticism of science and genetics is
influenced by religious standing, as well as other factors. It has been largely discussed
that perceptions towards science are influenced by religion, especially when science
and religion offer competing accounts of an issue (Evans, 2011; Dickerson et al.,
2008; O’Brien & Noy, 2015). The students in our study also reflected previous
findings according to which religious students tend to be more critical towards science
and express lack of faith in genetic testing. This was expressed, for instance, by their
criticism that today too many tests are performed, and that genetic tests' results are not
always reliable. Allum et al. (2014) and Siani & Ben-Zvi Assaraf (2015a) have
pointed out that religious students, especially those who have less scientific
knowledge, are more critical towards performing genetic testing. This once again
places religion as a central and significant factor that influences the decision making
of students towards genetic testing and genetic counseling.
In light of this research and the relevant scientific literature, a variety of mechanisms
and interactions have risen between the three basic themes - norms, values and
knowledge/perceptions - in the context of genetic counseling and genetic testing. We
shall now discuss the mutual effects that occur between each pair. In this part of the
discussion sub categories from the three category trees (figures 2-4) will also be
mentioned.
The Triple C model shows that the link between 'norms' and 'knowledge and
perceptions ' is two-directional. The addition of knowledge, which is part of the
145
scientific-medical aspect, enables a change and adjustment of norms known as
cognitive dissonance. Cognitive dissonance is a motivational state brought about
when a person holds two cognitive elements that oppose one another (Wicklund &
Brehm, 2013). The addition of new knowledge opens the possibility of greater
flexibility in one's norms, making room for additional norms in the behavioral arsenal.
This has been found, for example, among pre-service teachers who gained the ability
to accept students who were unlike them thanks to the additional knowledge they
gained about the students' personalities and beliefs (Eisenhardt, Besnoy & Steele,
2012).
Genetic knowledge and increased awareness of risk may at times make individuals
more likely to challenge their previous norms and start investigating their own family
histories or seeking genetic counseling (Hall & Olopade, 2005). This additional
knowledge can change norms that prevent people from undertaking genetic testing by
reducing fear and by undermining the stigma that genetic testing can sometimes
cause. It can thus be a source for increased control of one's genetic situation, which
finds expression in the students’ emphasis on the fact that knowing can prevent the
state of uncertainty.
Research has also shown that there are significant advantages to receiving genetic
information at an early stage of life. It enables the patients to prepare themselves and
allows them to avoid uncertainty (Rhodes, 2006), which are both concerns that were
frequently mentioned by our students. The potential benefit of additional genetic
knowledge in terms of improved health has been proven to be a strong motivator for
conducting genetic testing (Phillips et al., 2000). That said, one must also be wary of
the danger becoming overwhelmed by an excess of genetic information that one does
not know what do with, - as in the case of prenatal whole genome sequencing
(Donley, Hull & Berkman, 2012). The fear of receiving more information than one
can handle – or of discovering problems that science does not yet know how to solve can in itself be a source of ambivalence regarding the extent to which one wishes to
engage in genetic testing.
In the other direction, when there is a conflict between norms and scientific-genetic
information or perceptions, it generates an opposition to receiving knowledge in the
genetic domain because it violates one's norms. Genetic information is not like all
other medical information, which is private. In medical genetics, there is always the
146
question of who does the genetic information belong to? What responsibility do
people have to tell others in their family of their own test results and inform them of
their risks? (Finkler, 2011). Such queries can generate opposition towards getting
genetic information, since it clashes with social and familial norms regarding the
individual's responsibility towards his family. Cultural differences, such as norms
among Italian women for example, lead to seeking less health care and going to less
genetic counseling than among the general society (Pivetti & Melotti, 2013), meaning,
the cultural norms oppose the acceptance of genetic knowledge.
The Triple C model also shows bi-directional relationships between 'values' and
'knowledge and perceptions'. Genetic knowledge influences one's values. Genetic
knowledge has recently become more accessible, and can now easily be shared on a
global basis (Kaye, 2015). This greater ease in distribution can increase people's
understanding the consequences of genetic situations, which in turn encourages them
to consider the moral consequences that are involved in using – not using - genetic
testing and genetic procedures. These considerations of moral consequences are
influenced by the knowledge of the individual, and by that individual's values (Sadler
& Zeidler, 2004; Siani & Ben- Zvi Assaraf, 2015b). For example, the awareness and
attention to moral consequences can lead to reliance on values that highlight the
'rights' of the individual, the family, or the community, and values that emphasize the
right of life. All of these seemed highly important to the students in our research.
In addition to knowledge influencing values, we can find evidence that values
influence the willingness to accept medical information and to use it. When there is a
conflict between the medical information and individual's values, that individual may
be unwilling to even receive that information, let alone act upon it. Evidence of such
antagonism has been observed amongst women who were not willing to receive
genetic information from genetic testing because of their religious values, and who
explained this decision through their religious objections to abortion or their concern
over the eugenic aspects of prenatal screening (Remennick, 2006). Religious believers
have been known to assume that in cases when there is a conflict between scientific
and religious claims about the world, the religious claim is correct (Evans, 2011). This
conflict, and the antagonism it sometimes created, was evident throughout our
interviews in the expression of religious values like "religion conflicts with science; I
am not willing to conduct genetic tests during pregnancy." This value is based on the
147
Jewish law that takes into account the stage of pregnancy, among other
considerations, when deciding if a termination of the pregnancy can be performed. It
also supports the idea that opposition to prenatal genetic testing could be related to a
religion-based belief in the intrinsic value of human life, which has been noted
amongst Catholics (Pivetti & Melotti, 2013), and which Judaism believes in too
(Baeke, Wils & Broeckaert, 2011). Religious values can thus influence knowledge
and perceptions by leading to an unwillingness to receive genetic information, which
in turn can cause such individuals to misunderstand genetic issues and genetic tests.
The link between values and norms is also reflected bilaterally in this model (Figure
4). Norms influence values in the domain of marriage for instance. In western society,
marriage has become a private decision to be made by the couple, as part of the belief
in liberty, equality and autonomy (Witte, 2012). This influence is reflected by the fact
that most of our students opposed the "Dor Yesharim" tests that make matches
according to genetic suitability (Frumkin et al., 2011). This norm of marriage as a
matter of personal choice, as opposed to marriage that is dictated by the community,
is part of the empowerment of individual rights. Our students' opinions largely reflect
the notion that "genetic background is not a relevant factor in choosing a mate," rather
love and their own will. These western influence-based norms correlate to values that
are also part of this western trend, such as the right one has not to know one's genetic
profile and the right to decide who to tell and who not to tell about it.
In addition to the influence norms can have on values, values can also provide moral
justification for norms, as in the case of religious values that influence behavioral
norms (Beauchamp, & Childress, 2001). Religious values mediate decisions about
prenatal diagnosis. Consequently, the decision about whether or not to have diagnostic
testing is generally related to attitudes towards the termination of pregnancy (Atkin et
al., 2008). In our research, we observed that religious values, like 'consulting the
Rabbi when deciding about genetic testing' and 'terminating the pregnancy based on
religious considerations', influenced norms regarding the acceptability of having an
abortion. It has been found that religiously motivated people are relatively more able
to accept the idea of raising a sick child. Believers have stated that their faith/religion
would influence their prenatal testing decision and that "accepting what is given" is
part of their cultural belief system (Learman et al., 2003). Parents of sick children felt
they received support from their spiritual communities and from God (Hexem et al.,
148
2011). Thus, religious values provide moral justification for norms such as not
conducting genetic procedures during pregnancy since these procedures may cause
the loss of the fetus, taking a life that is not ours to take.
Study Limitations
Since the students we interviewed volunteered to do so after reading the notice about
looking for religious students for an interview on genetic issues, it might be that the
students who volunteered were those who are not averse to addressing genetic issues,
or students who are specifically interested in this domain, or alternatively students
who had previously been exposed to a genetic dilemma. In some of the interviews, the
interviewees raised personal genetic dilemmas with which they had dealt in the past.
This factor might have biased our findings in some way, though during our analysis it
did not seem to be particularly influential on the decision making elements raised by
the interviewee.
Another limitation is that the unique characteristics of the National Religious
community that we have investigated are specific to Israel. Despite this specificity,
the combination of the involvement of a religious sector in the general society allows
to parallel it in future to other populations around the world while considering the
three sides of the model as a universal application.
Practical Implications
The mechanisms of mutual interaction described in the Triple C model show the
complexity of the decision making that takes place in the genetic testing domain, and
the multiplicity of the considerations that were raised by the National Religious Israeli
undergraduate students in this study. The Triple C model illustrates the fact that
genetic counseling is a complex challenge because many issues have to be taken into
consideration during the counseling process. Given these findings, it is understood
that sociocultural aspects are influential and that decision making must be tailored to
each target population according to its background, based on their relevant exposure
to and knowledge of the domain (Peters & Petrill, 2011).
This model could have useful practical applications in other populations around the
world, especially in religious ones, since the central axis of this model is religion. The
149
model can be used to identify and analyze decision making considerations in the
genetic counseling domain and to better address counselees at a genetic counseling
session. For example, the model can be used to identify the expectations of a certain
religious community towards their members, expectations that influence the norms of
the members regarding genetic decision making. In addition, if the worldview of
religious patients, their criticism towards genetics due to religious affiliation and the
expectations of their religious community could thus be known to the counselor, it
could make the counseling session potentially much more efficient and more suited to
the norms, values and genetic knowledge of the counselee. The model can also be
used to identify reasons underlying opposition to accepting genetic knowledge when
these arise from the counselees' norms. Finally, it can serve to highlight the moral
consequences counselees may be considering when debating the question of using or
not using genetic testing and genetic procedures. These considerations of moral
consequences are influenced by the individuals' knowledge and their values, and their
analysis can once again lead to more useful genetic counseling that is adapted to the
personal set of values and the knowledge of the counselee.
In order to promote the awareness of genetic counselors to this complexity, we
suggest a pedagogical approach that is based on SSI (Socio-scientific Issues), an
approach that allows the student to make decisions while taking into account his
ethical dimensions of science and the values (Sadler & Fowler, 2006; Sadler &
Zeidler, 2005). According to this approach, counselees can be introduced to relevant
case study dilemmas, leading them to start a dialogue likely to bring forth evidence of
their prior values, norms and knowledge. The counselors will be able to use this
information to address the diversity of the population they are dealing with, relating to
the personal perspective of each pair and accepting the different perspectives of
different counselees according to the different characteristics of each family.
If religion is a central issue in the counselee's life, the topic should be raised during
the counseling session and connected to each of the three main categories of the
model. In Israel, counselors may find the National Religious sector as a mediator
between the secular and the ultra-Religious society, and that one can be religious and
at the same time be sensitive to other values. Understanding the full spectrum of the
elements in place can help genetic counselors ensure that they are accounting for as
many as possible of the aspects that can form barriers to informed decision making.
150
Using this model may help us identify the sociocultural differences between different
types of patients and thus better assist them in addressing their genetic status (Souza
et al., 2014).
Research Recommendations
Although our model is based specifically on a narrow religious society in Israel, we
propose implementing it in other diverse societies around the world. Furthermore, the
model should be applied in additional research to a larger amount of people with
varied educational background, since we have applied it only to a specific population
of undergraduate students. Such research would serve to further validate the model,
and would allow comparisons between the genetic decision making considerations of
different populations around the world according to their culture, values, norms,
perceptions and knowledge.
151
General Summary and Discussion
Main results
The results section will follow the four research questions, each of which is answered
by one of the chapters in this research. The main findings from the first research
question, dealing with culturally competent genetic counseling are: first, most of the
genetic experts speak in one 'language,' expressing clear and similar principles during
their counseling. Secondly, in order to make genetic counseling culturally competent,
one should find out in advance who is being counseled, when it is appropriate to do so
and what specifically to counsel. Thirdly, for the "who" component, which includes
the cultural background of the patient, an intensive early acquaintance is necessary.
And finally, culturally competent genetic counseling is essential for informed decision
making.
The second research question, dealing with the attitudes of students to genetic
counseling and testing, reveals that religious students have less positive attitudes
towards genetic testing than secular ones. Moreover, students who do not study life
sciences are less in favor of knowing more about their genetic situation. Studying life
sciences and developing a scientific approach moderates the cultural differences that
exist between the religious and non-religious students. Last of all, secular students,
especially those who do not study life sciences, are willing to perform many genetic
tests, sometimes even more than actually needed, a finding which might mean that
they employ less critical thinking.
The third research question deals with the moral considerations taken into account by
the students when confronted by genetic dilemmas. The findings in this research
question clarified to us that religious belief was the most influential factor on the
students' moral considerations; gender was the second most influential factor, and
field of study was of least influence on the type of moral reasoning they employed.
The fourth research question, which dealt specifically with the decision making
considerations of religious students, revealed that overall these students reflect
Western attitudes to genetic testing, i.e. attitudes that resemble the Western, secular
society in which they are fully integrated. Some of the religious students did not
mention religion and religious ruling among their considerations when making
decisions in the field of genetic testing. Nevertheless, about a third of the students did
152
mention faith as an important issue in their decision making. Furthermore, nearly all
of the students talked about some practical or philosophical religious considerations,
suggesting that – even if they did not mention it explicitly - their religion was
reflected in some way in their deliberations.
Discussion
The main contribution of this research is its portrayal of the complexity of competent
cultural genetic counseling. This is demonstrated via the "Triple C model" (figure 1,
fourth chapter), which illustrates the highly personal elements involved in genetic
counseling, showing how the procedure is influenced by individuals' culture, shaped
by their norms, values, genetic knowledge and perceptions. This complexity is also
demonstrated in the complex insights expressed by the experts in their interviews,
which addressed some of the same issues that arose later in the study (first chapter),
stressing the need for culturally competent genetic counseling.
The personalized characteristics of the genetic counseling procedure are reflected
among the students, who sometimes see religion differently than their society sees it
and choose, based on their subjective viewpoint, which religious recommendations to
accept and use in their decision making, according to their individual and personal
views (third and fourth chapters). The religious students we focused on belong to the
National Religious sector, whose members are highly integrated into secular society
(Herman et al., 2014). Though they observe many strict religious rules, they also work
in all places: in the high-tech industry, in the army, in the communication system etc.,
and see themselves as a part of general society.
As we have concluded from the second chapter, the willingness to pursue genetic
counseling correlated positively with greater study in the life sciences among the
religious students, while the same correlation was either nil or negative among the
non-religious students. This finding may be due to the fact that while studying science
the students gain cognitive tools and expand their dialogue with medical examinations
and medical procedure, making them able to accept genetic counseling more
positively. We thus assume that the additional knowledge is the factor that allows for
critical thinking and for informed decision making. Moreover, on the emotional level,
which includes attitudes, the degree of studying medical and scientific issues raises
the students' awareness and readiness to accept scientific medical issues.
153
The less stringent approach to religion and to society's expectations can be seen more
clearly among those who study life sciences. Among them, the religious identity is not
always the most central and dominant in the procedure of decision making regarding
genetic testing (second chapter). The religious norms of these students are mainly
influenced by their familial and personal experiences, as well as their experiences in
the academic world (fourth chapter). On the other hand, religion has been found to be
more significant among those who study other fields and are less genetically educated.
These students express more commitment to religious demands and give these
religious demands a higher priority (second chapter). The variety in the extent and
manner to which religion influences the students in this study might be due to the fact
that these religious students live amongst – and are in constant contact with - the
secular elements of Israel's society. Within the context of this coexistence of secular
and religious influences, we found that the students' decisions were based in a wide
range of cultural and religious demands (fourth chapter). Previous studies have also
shown that there is not always an exact correlation between belief and behavior, and
that often the decision-making of a religious person regarding the testing of the fetus
differs from the official religious stance (Frumkin, Raz, Plesser-Duvdevani &
Lieberman, 2011). Moreover, in Israel, differences in religious belief and custom are
clearly reflected in differing genetic practices, with some sectors rejecting
participation in genetic testing due to their religious beliefs (Raz, 2004; Rosner et al.,
2009; Sher et al., 2003; Zlotogora, 2002).
As we can see, the main issue that affects the attitudes of students (chapter 2) and
their moral considerations (chapter 3) is the religious factor. Moreover, the two other
factors that were traced are influential in different ways, with genetic knowledge
influencing attitudes more than gender while gender influences moral reasoning more
than the student's genetic and scientific knowledge. This finding might be explained
by the fact that religious students’ science education has made them 'put aside' their
religious principles as a result of broadening their scope to include additional
considerations. That might be the reason why they did not elaborate more
significantly by means of moral principles as we had expected, placing field of study
and genetic knowledge as the least influential factor on moral principle reasoning.
Throughout this research we saw a mixed pattern of influence of gender on student
attitudes and moral considerations and found that it is a less influential factor than
154
religious affiliation. This finding is consistent with other researchers' finding (Fodor
& Balogh, 2010; Inglehart & Norris, 2003) that gender is of less influence nowadays,
though other researchers have previously shown that at the high school level there are
gender differences at least in boys' and girls' scientific interests (Baram-Tsabari &
Yarden, 2011).
Other researchers (Prainsack, Hashiloni-Dolev, Kasher & Prainsack, 2009) have also
pointed out the complexity in the pattern of elaborations on ethical issues by different
student populations, mentioning the fact that a definite pattern resembling a certain
population cannot be seen. They have also shown that the elaborations and attitudes
regarding ethical issues are diverse, not always placing education and cultural
background as the factors that determine ethical argumentation.
Even though the patterns of ethical elaborations are not always clear and clear-cut, it
is interesting to note that people feel a moral obligation to express their view when
moral issues are involved: "The abundance of ethical over scientific content in
readers’ comments might have to do with the high personal value of ethical attitudes.
When moral issues are involved, people might feel a moral obligation to express their
view. Furthermore, such attitudes relate to the way people see themselves, which
cannot easily be changed." (Laslo, Baram-Tsabari & Lewenstein 2011 pp. 863). It can
thus be understood that ethical elaborations are raised as a response to the specific
scenario that is presented. When constructing a questionnaire which includes ethical
scenarios this aspect should be taken into consideration.
Another important insight of this research (first, second and third chapters) is that
genetic knowledge is critical when making genetic decisions. This was clearly
reflected in the interviews with the experts and in the questionnaires that directly
inquired into the students' genetic knowledge. The students' additional genetic
knowledge helps them think more critically about the genetic options that they
confront. Recent research has also found the counselees' previous explicit genetic
knowledge (Chen & Goodson, 2007; Frets et al., 1990; Vos et al., 2012; Wilson,
Ferguson & Thorn, 2011), and their procedural knowledge of the counseling process
(Biesecker & Peters, 2001) to be extremely influential to their informed decision
making, especially in the field of genetic counseling and testing.
155
This insight does not correspond to the findings of recent research, which has shown
that an increase in scientific literacy and scientific expertise sometimes decreases the
trust and attitudes towards scientific fields (Bolderdijk, Gorsira, Keizer & Steg, 2013;
Kahan, et al., 2012). My findings showed a different trend, maybe because knowledge
does give an advantage in the genetic counseling field, where there are many
misunderstandings and alternative concepts. Trust and personal involvement in fields
such as climate change (Kahan, et al., 2012) are less critical than in the field of
genetic testing and counseling, which is a very personal domain that has immediate
implications on one's life, and the effects of which can be more immediately felt.
While other scientific fields could certainly also have future implications for
individuals, they does not always see these implications immediately, even when their
scientific literacy is high.
All four chapters raise the need to place the individual in the center of the counseling
process, suggesting that culturally competent genetic counseling should address not
only the religious affiliation but also the specificity of each patient - the personal
features that are reflected through each individual's attitudes (Chen & Goodson, 2007;
Vos et al., 2012; Wilson et al., 2011) norms (Pivetti & Melotti, 2013) and values (Van
der Zande et al., 2009). All these influences together add up to a unique individual,
who requires unique genetic counseling particularly adapter to that individual's needs.
Research significance
I constructed an open and a closed ended questionnaire for this research (chapters 2
and 3), which can be put to further use in additional populations to identify genetic
knowledge, attitudes, values and norms regarding genetic testing and genetic
dilemmas. I have also constructed a model (see figure 1, explained fully in chapter 4)
that unifies the complex and multifactor decision making considerations of students in
the field of genetic testing. This model could have useful practical applications in
other populations around the world, especially in religious ones, since the central axis
of this model is religion.
The model can be used to identify and analyze decision making considerations in the
genetic counseling domain and to better address counselees at a genetic counseling
session. For example, the model can be used to identify the expectations of a certain
156
religious community towards their members, expectations that influence the norms of
the members regarding genetic decision making. As the model shows, if the
worldview of religious patients, their criticism towards genetics due to religious
affiliation and the expectations of their religious community could be known to the
counselor, it could make the counseling session potentially much more efficient and
more suited to the norms, values and genetic knowledge of the counselee. The model
can be used to identify reasons underlying opposition to accepting genetic knowledge
when these arise from the counselees' norms. Finally, it can serve to highlight the
moral consequences counselees may be considering when debating the question of
using or not using genetic testing and genetic procedures. Using this model may help
us identify the sociocultural differences between different types of patients and thus
better assist them in addressing their genetic status (Souza et al., 2014).
Finally, my research offers practical recommendations for culturally competent
genetic counseling: According to all four chapters, in a genetic counseling session it
is advisable to clearly ask about religious barriers, in order to get a full picture of the
patients' considerations. Perhaps a discussion about their spiritual and religious beliefs
would provide reassurance, comfort and strength that might alleviate some of their
distress during genetic counseling session (Seth et al., 2011).
According to the 3rd chapter, when consulting a non-consequentialist (a patient with
less awareness of the possible consequences of the genetic situation), the genetic
counselor may possibly emphasize the consequences of the genetic situation so that
such patients will be able to take in account as much information as possible and as a
result will make informed decisions according to their beliefs and values.
Lastly, according to the 1st and 4th chapter, in order to promote counselors' awareness
of the complexity of decision making in the genetic domain, we suggest a pedagogical
approach that is based on SSI (Socio-Scientific Issues), an approach that allows
decision making while taking into account values and ethical dimensions of science
(Sadler & Fowler, 2006; Sadler & Zeidler, 2005). According to this approach,
counselees can be introduced to relevant case study dilemmas, leading them to start a
dialogue likely to bring forth evidence of their prior values, norms and knowledge.
The counselors will be able to use this information to personally address the diverse
population they are dealing with.
157
Limitations of the study
The central limitation of this study is that, due to its limited scope, it is not
representative of the full diversity of Israel’s population. Using undergraduate
students was a useful means of gathering data from a population of the appropriate
age and of assessing the attitudes, norms, values and decision making considerations
of this population to genetic testing and counseling, but this choice necessarily limited
the population in important ways. This choice required us to exclude non-Jewish
students from the sample, and it also meant that the study’s scope excluded other
sectors of Israel’s population that tend to be underrepresented in higher education
institutions (e.g. people from lower socioeconomic backgrounds). Our research
population therefore does not reflect all of the Israeli population, and the
questionnaire should be modified if needed for a variety of populations, as has
previously been done with a questionnaire testing informed choice (Dormandy, et al.,
2007). This modification would make the questionnaire available to diverse
populations, enabling a comparison of the moral considerations of citizens from
different cultures (Zeidler et al., 2013).
The cultural diversity in the state of Israel is extremely high, since it is composed of
individuals from multiple ethnic and cultural backgrounds that embrace a variety of
religious, national and cultural identities. The Jewish sector itself is divided into
multiple religious and cultural sub-groups ranging from “secular” to “semireligious/traditional” to “national-religious” to “ultra-religious,” divisions which can
translate into extreme diversity in values, education and daily practices/behavior.
Israel’s non-Jewish minority groups incorporate an additional complex diversity into
its population, differing significantly not just from the already diverse Jewish
population, but from one another as well.
When dealing with moral principles (especially in chapter 3) it should be noted that
non-religious people do also have moral principles; the difference might be that
religious principles are often understood as a direct disclosure of truths from God. In
other words, the divine source of these principles is what makes them an utterly
binding force among the religious people who hold them, and what makes potential
conflicts with scientific issues more difficult to resolve.
158
Properly and fully addressing all of these groups’ relationships with genetic
counseling is extremely important, but beyond the scope of our study. Our limited
venture is only the first step towards gathering the information necessary to fully
understand and address the needs of everyone who can and should benefit from the
advantages of genetic counseling.
159
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‫תקציר‬
‫ייעוץ גנטי הוא תהליך בו ניתן מידע לנועץ לגבי אופן ההורשה‪ ,‬השכיחויות וההשלכות של מחלות‬
‫גנטיות שהנועץ ומשפחתו עלולים לחלות בהם‪ .‬מטרת מחקר זה הייתה לחקור ולאפיין את הייעוץ‬
‫הגנטי המותאם תרבותית בחברה רב‪-‬תרבותית כפי שמשתקף בעמדות‪ ,‬במאפייני ההנמקה‬
‫המוסרית וב שיקולים בקבלת ההחלטות של סטודנטים בישראל כלפי בדיקות גנטיות‪ ,‬ייעוץ גנטי‬
‫ודילמות גנטיות‪ .‬שאלות המחקר שלנו היו‪ .1 :‬מהם מאפייני הייעוץ המותאם תרבותית בחברה‬
‫רב‪ -‬תרבותית כפי שהוא נתפס על ידי מומחים לגנטיקה? ‪ .2‬מהם העמדות של סטודנטים השייכים‬
‫לחברה רב‪-‬תרבותית כלפי בדיקות גנטיות וייעוץ גנטי? ‪ .3‬מהם השיקולים המוסריים של‬
‫הסטודנטים החיים בחברה רב‪-‬תרבותית לגבי ייעוץ גנטי ובדיקות גנטיות? ‪ .4‬חקר מקרה של‬
‫החברה הדתית לאומית (המהווה חלק מן החברה הרב‪ -‬תרבותית בישראל)‪ :‬מה מאפיין את‬
‫השיקולים וקבלת ההחלטות של הסטודנטים לגבי בדיקות גנטיות יעוץ גנטי?‬
‫המחקר נערך באמצעות מחקר משולב שכלל שיטות מחקר איכותניות‪ ,‬ביניהן ראיונות עומק עם‬
‫‪ 15‬מומחים לגנטיקה ועם ‪ 51‬סטודנטים המשויכים למגזר הדתי לאומי‪ ,‬וכן שאלונים פתוחים‬
‫שמולאו על ידי ‪ 449‬סטודנטים‪ .‬בנוסף לכך נעשה שימוש בשיטת מחקר כמותית שכללה העברת‬
‫שאלונים סגורים בעלי סולם ליקרט ל ‪ 490‬סטודנטים‪ .‬השאלונים הסגורים והפתוחים הועברו‬
‫לאוכלוסיית סטודנטים שחציים מגדירים את עצמם כדתיים וחציים כחילוניים‪ ,‬חציים לומדים‬
‫מדעי החיים וחציים לא‪ ,‬חציים גברים וחציים נשים‪.‬‬
‫הממצאים העולים מן הניתוח האיכותני של ראיונות המומחים משרטטים תמונה רחבה ומורכבת‬
‫בהקשר לייעוץ גנטי‪ .‬אני מציעה כי ממצאים אלו משקפים סוגיות המתייחסות לארבע שאלות‬
‫מרכזיות‪ ) 1 :‬מדוע חשוב לבצע ייעוץ גנטי מותאם תרבותית? ‪ )2‬מיהו קהל היעד של הייעוץ הגנטי?‬
‫‪ )3‬מה צריך להיות התוכן של הייעוץ הגנטי? ‪ )4‬איך ניתן לערוך ייעוץ גנטי מותאם תרבותית?‬
‫מההשוואה בין הסטודנטים עולה כי לסטודנטים הדתיים עמדות פחות חיוביות כלפי בדיקות‬
‫גנטיות מאשר לסטודנטים חילוניים‪ .‬עוד עולה כי סטודנטים דתיים שאינם לומדים מדעי הטבע‬
‫פחות מעוניינים לדעת מהו מצבם הגנטי; נראה כי הרחבת הידע הביולוגי ופיתוח הגישה המדעית‬
‫מקטינים את הפער ביחסם של דתיים וחילוניים כלפי בדיקות גנטיות‪ .‬בנוסף לכך‪ ,‬הממצאים‬
‫מצביעים על כך שהדת היא הגורם המשמעותי ביותר‪ ,‬מבין הגורמים שנבדקו‪ ,‬על סוג ההנמקה‬
‫המוסרית של הסטודנטים‪ .‬המחקר מראה עוד כי הסטודנטים השייכים למגזר הדתי לאומי‬
‫מביעים פעמים רבות עמדות ושיקולי קבלת החלטות בגישה מערבית‪ ,‬מאחר והם משלובים מאד‬
‫בחברה הישראלית המערבית‪ ,‬ופעמים רבות אינם מציגים עמדות המבוססות על אמונה ועל‬
‫שיקולים דתיים‪.‬‬
‫כל ארבעת פרקי המחקר מעלים את הצורך להעמיד את האדם במרכז בעת ייעוץ גנטי‪ ,‬ומעלים את‬
‫החשיבות של ייעוץ גנטי מותאם תרבותית המתבסס לא רק על השתייכותו הדתית של האדם אלא‬
‫גם על המאפיינים האישיותיים שלו ‪ -‬על הערכים‪ ,‬הנורמות‪ ,‬העמדות והידע הגנטי שלו‪ .‬כל אלו‬
‫מצטרפים ליצור את האדם הייחודי שנחוץ לו ייעוץ המותאם לו תרבותית‪.‬‬
‫התרומה הייחודית של המחקר היא הצגת המורכבות של הייעוץ הגנטי המותאם תרבותית‪,‬‬
‫והמחשתה באמצעות מודל ה‪ ,"Triple C"-‬אשר נבנה במסגרת הפרק בו רואיינו סטודנטים מן‬
‫‪185‬‬
‫המגזר הדתי לאומי‪ .‬מודל זה מציג את המרכיבים השונים המעורבים בייעוץ גנטי ומראה איך‬
‫התהליך מושפע מהנורמות‪ ,‬הערכים‪ ,‬הידע הגנטי והתפיסות של האדם לגבי גנטיקה‪.‬‬
‫מילות מפתח‪ :‬התאמה תרבותית‪ ,‬בדיקות ויעוץ גנטי‪ ,‬מחקר משולב‪ ,‬השתייכות דתית‪ ,‬נורמות‪,‬‬
‫ערכים‪ ,‬תפיסות ועמדות גנטיות‪ ,‬הנמקה מוסרית‪.‬‬
‫תם ונשלם שבח לאל בורא עולם‬
‫‪186‬‬
‫הצהרת תלמיד המחקר עם הגשת עבודת הדוקטור לשיפוט‬
‫אני מרב סיאני החתומה מטה מצהירה בזאת כי‪:‬‬
‫‪‬‬
‫חיברתי את חיבורי בעצמי‪ ,‬להוציא עזרת ההדרכה שקיבלתי מאת מנחה‪.‬‬
‫‪ ‬החומר המדעי הנכלל בעבודה זו הינו פרי מחקרי מתקופת היותי תלמידת‬
‫מחקר‪.‬‬
‫בעבודה נכלל חומר מחקרי שהוא פרי שיתוף עם אחרים‪ ,‬למעט עזרה טכנית‬
‫הנהוגה בעבודה ניסיונית‪ .‬לפי כך מצורפת בזאת הצהרה על תרומתי ותרומת‬
‫שותפי למחקר‪ ,‬שאושרה על ידם ומוגשת בהסכמתם‪.‬‬
‫תאריך ___‪ _____9.3.16‬שם התלמידה‪ :‬מרב סיאני‬
‫‪187‬‬
‫חתימה _‬
‫__________‬
‫העבודה נעשתה בהדרכת‪:‬‬
‫ד"ר אורית בן‪ -‬צבי אסרף‬
‫במחלקה להוראת המדעים והטכנולוגיה‬
‫בפקולטה למדעי הרוח והחברה‬
‫‪188‬‬
‫האתגר של ייעוץ גנטי מותאם תרבותית בחברה רב‪-‬תרבותית‪,‬‬
‫חקר מקרה של החברה הדתית לאומית בישראל‬
‫מחקר לשם מילוי חלקי של הדרישות לקבלת תואר "דוקטור לפילוסופיה"‬
‫מאת‬
‫סיאני‬
‫מרב‬
‫הוגש לסינאט אוניברסיטת בן גוריון בנגב‬
‫אישור המנחה _________‬
‫___________‬
‫אישור דיקן בית הספר ללימודי מחקר מתקדמים ע"ש קרייטמן‬
‫‪9.3.2016‬‬
‫כ"ט אדר א' תשע"ו‬
‫באר שבע‬
‫‪189‬‬
‫האתגר של ייעוץ גנטי מותאם תרבותית בחברה רב‪-‬תרבותית‪,‬‬
‫חקר מקרה של החברה הדתית לאומית בישראל‬
‫מחקר לשם מילוי חלקי של הדרישות לקבלת תואר "דוקטור לפילוסופיה"‬
‫מאת‬
‫סיאני‬
‫מרב‬
‫הוגש לסינאט אוניברסיטת בן גוריון בנגב‬
‫‪9.3.2016‬‬
‫כ"ט אדר א' תשע"ו‬
‫באר שבע‬
‫‪190‬‬