ARTICLE IN PRESS
Social Science & Medicine 60 (2005) 331–344
Warranted concerns, warranted outlooks: a focus group study
of public understandings of genetic research
Benjamin R. Batesa,*, John A. Lynchb, Jennifer L. Bevanc, Celeste M. Conditb
a
School of Communication Studies, Lasher Hall, Ohio University, Athens, OH 45701, USA
Department of Speech Communication, 110 Terrell Hall, University of Georgia, Athens, GA 30602, USA
c
Greenspun School of Communication, University of Nevada—Las Vegas, 4505 Maryland Parkway, Box 455007,
Las Vegas, NV 89154, USA
b
Available online 6 July 2004
Abstract
This paper discusses how the American public accounts for the concerns that they have about genetic research
and the benefits that they foresee. We develop a general framework for discussing public claims about
genetic technology based on Stephen Toulmin’s model of warrants in argumentation. After a review of the
results from public opinion polls about genetic research, we present a focus group study of public understandings
of genetics. We outline the warrants, or publicly accepted ‘‘good reasons’’, that this group offers for accepting
some aspects of genetic technology and for rejecting other aspects. The warrants presented by the public in
their discussion of genetic research indicate that the public has a complex, informed understanding of genetic
research, albeit a non-technical one. The paper concludes with a discussion of the importance of public participation
in debates over genetic research and the ways that researchers and policymakers could adapt to public concerns
about genetics.
r 2004 Elsevier Ltd. All rights reserved.
Keywords: Genetic technology; Public opinion; Warrants; Public understanding of science; USA
Introduction
Judging by the movies, messing with the genome is a
bad idea. Films such as Godzilla, The Fly, and Attack of
the Killer Tomatoes show that animals, human, and
vegetables attack when someone manipulates their
genes. The creations of science fiction are unlikely to
come into being. Nevertheless, these science fiction
concerns indicate that not everyone is comfortable with
new biotechnologies. Knowing what concerns exist and
finding ways to adapt to them is important. Researchers
in the United States often rely on public financial
support to conduct their work. If the public’s concerns
*Corresponding author. Tel.: +1-740-593-4828; fax: +1740-593-4810.
E-mail address: [email protected] (B.R. Bates).
about genetic technology are not addressed, this support
may decrease. Similarly, despite excitement over potential pharmacogenomic medications, medical providers
may find it difficult to prescribe these drugs if patients
worry that taking them will limit their insurability and
employability. To take advantage of genetic research,
the public’s concerns may need to be addressed.
The purpose of this paper is to examine public
concerns in the USA about genetics technology. We
begin by reviewing public concerns identified in the
professional medical and genetics literature through the
use of national telephone public opinion polls. Although
these polls provide breadth by surveying a representative
sample, they offer limited depth. To address these
concerns, we provide the results of a focus group study.
We then offer implications of publicly expressed
concerns about genetic technology and directions for
future research.
0277-9536/$ - see front matter r 2004 Elsevier Ltd. All rights reserved.
doi:10.1016/j.socscimed.2004.05.012
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Professionals diagnose public concerns
The public has a variety of concerns about genetic
research and genetic technology. Although several
investigators have found that the public is concerned
about ‘‘improper’’ manipulation of the genome (Gottweis, 2002; Macer et al., 1995; Weiner, 2001), the range
for what counts as ‘‘improper’’ is not clear. Although
the ratings of acceptability reported by national publics
vary, the standards used are often the same (Eisendel,
2000; Macer & Ng, 2000; Priest, 2000). Some genetic
technologies are rejected on moral grounds, because
they lack utility, or because they are too risky. Other
applications may be judged moral, useful, and safe but
be unwanted because the controller of the technology is
not trusted. Although a given genetic technology might
be scientifically possible, its use can become socially
impossible.
In this essay, we are concerned not only with the
public’s claims about genetic research but also the
warrants that they offer. Any argument can be divided
into three parts. The first two are the claim—‘‘the
conclusion whose merits we are seeking to establish’’
(Toulmin, 1958, p. 97)—and the data—‘‘the facts we
appeal to as a foundation for the claim’’ (Toulmin, 1958,
p. 87). Polling data outlines the claims made by
members of the public. These claims come from
populations that are exposed to similar messages and
that share in a common culture. Nevertheless, these
same data are used to articulate competing claims about
genetics.
When competing claims rely on different kinds of
data, differences of opinion cannot be resolved by
presenting further data. ‘‘Our task’’ in resolving
disputes, as argumentation theorist Stephen Toulmin
(1958, p. 98) indicates, ‘‘is to show that, taking these
data as a starting point, the step to the original claim or
conclusion is an appropriate one’’. Toulmin calls these
connections warrants. Claims and data may be articulated explicitly, but the warrants are often implicit. In
judging the reasonableness of an argument, the warrant
may need to be extracted in addition to the data. For an
argument to be reasonable, the connection made
between the data and the claim has to correlate with
some standard of evaluation considered acceptable to a
speech community (McKerrow, 1990; Bates, 2003).
Speech communities may consider several warrants to
be equally valid ways of processing data, even if these
warrants lead to different outcomes. Toulmin (1976,
1982) offers a non-exclusive list of warrants that are
generally accepted across speech communities: reasoning
from needs and interests, applying ‘‘natural laws’’ of
ethics or morality, appealing to the text of legislation,
providing statements of duty that devolve from a
person’s official or social role, employing appeals to
authority, or reasoning through analogy, scientific
methodologies, or logical deduction. Conflicts in conclusions can often be traced to differences in the data
and warrants used. When arguing about genetics,
genetic researchers may collect the data of microbiology
and use warrants based on the scientific method to
justify their claims. The lay public may use social
knowledge and experiential data interpreted through
analogic and inductive warrants to support their claims.
Attitudes expressed in polls
Public opinion polls are useful for outlining public
understanding of genetic research. Although polls allow
many responses to be collected quickly, Davison, Barns,
& Schibechi (1997, see also Wellcome Trust 2000) have
called for a deeper canvassing of the public to fill in this
outline. These outlines have been filled in well by
researchers in the United Kingdom, Europe, and
Australia. Collectively, their findings indicate that public
understanding of genetic research is not necessarily tied
to technical knowledge (Henderson & Maguire, 2000).
Moreover, an increase in available information about
genetics does not translate into additional knowledge for
most members of the lay public (Morris & Adley, 2001),
nor does knowledge translate into acceptance (Eisendel,
2000). Instead of assuming that public understanding
should be tied to factual knowledge, the public’s ability
to translate scientific accounts into personally meaningful information may be a better reflection of the
public’s understanding (Parsons & Atkinson, 1992;
Kerr, Cunningham-Burley, & Amos, 1998). When this
process of translation is investigated, additional depth is
provided to public opinion poll data. Members of the
public in the United Kingdom, Europe, and Australia
are quite good at bringing personal frames of reference
to bear on genetics (Barns, Schibechi, Davison, & Shaw,
2000; Davison et al., 1997; Kerr et al., 1998; Morris &
Adley, 2001; Parsons & Atkinson, 1992).
Personal frames of reference often differ because of
social standing and personal history. Thus, these frames
can form competing lenses that can affect substantively
a person’s perception of genetics (Davison, Macintyre,
& Smith, 1994). On a broader scale, Gaskell, Bauer,
Durant, and Allum (1999) suggest that some societies
may view genetics differently than others do because of
their cultural sensitivities and national historical factors.
This need to consider cultural sensitivities and historical
factors is often backed by the higher support Americans
lend to genetics than other publics (Davison et al., 1997;
Gaskell et al., 1999). This difference is commonly
assigned to different perceptions of governmental
regulation, scientific practices, and health system structure between the United States and other states.
Although the breadth of Australian, British, or European public opinion polls is often complemented by
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qualitative research, comparisons made to the United
States public are weakened by the lack of similar indepth investigation. Most discussion of American public
understandings has used public opinion polling only.
These polls do, however, useful starting points for small
group discussions and, eventually, a national dialogue
on genetic science.
One area where the public has expressed concern
over genetic manipulation is cloning. The public
often rejects cloning because it is ‘‘playing God’’ or
because it improperly intervenes in natural reproduction
(Nippert, 2002). If cloning is rejected on these grounds,
medical and genetics researchers may find it difficult to
persuade the public to support cloning research. Despite
worries over cloning, the public also makes a distinction
between acceptable therapeutic cloning and unacceptable reproductive cloning (Geller, Bernhardt, & Holtzman, 2002; Tambor, Bernhardt, Rodgers, Holtzman, &
Geller, 2002). Polls indicate that the public is not eager
to pursue cloning; from 1998 to 2002, 66% to 90% of
the American public indicated that embryonic, animal
and human cloning were unacceptable. These polls,
however, do not indicate why the public is opposed to
cloning.
The public has expressed many other concerns. Some
segments of the public are bothered by researchers’
potential conflicts of interest (Caulfield, Gold, & Cho,
2000; Steele, 2000). That is, researchers may seek
personal gain by patenting sections of the human
genome and using genetic tests to derive medications.
Pharmaceutical companies, in turn, could sell these
medications, and the persons tested would not be
compensated. This concern in not unfounded; American
courts have ruled that ‘‘statutory law drastically limits
any continuing interest of a patient in excised cells’’,
thus denying a research participant’s ownership of his or
her cells (Moore, 1990, at 4c).
In addition to fears over exploitation, the public is
concerned that genetic research will degrade medical
privacy (Anderlik & Rothstein, 2001; Geller et al., 2002;
Gill & Richards, 1998). In addition to improper sharing
within the medical community, members of the public
also fear that insurers and employers will access records
of genetic testing and discriminate on the basis of
genetics (Geller et al., 2002; Tambor et al., 2002). These
concerns are reflected in Congressional debates over
whether legal protections under the Americans with
Disabilities Act and the Health Insurance Portability
and Accountability Act are sufficient or if new genetic
non-discrimination laws are needed (Krumm, 2002).
In addition to discrimination against individuals,
some members of the public are concerned that genetics
research will authorize eugenics (Fox, 2002; Vines,
1997). Poll respondents believe that selective abortion
could be used to weed out ‘‘undesirable’’ children
(Geller et al., 2002; Gottweis, 2002). Although some
333
respondents approve of manipulating embryos to
prevent debilitating conditions, they fear that fetuses
with genes linked to common diseases will be seen as
disabled and be aborted (Gill & Richards, 1998). With
fears about the eugenic uses of genetic testing, it is
unsurprising that African Americans express a higher
level of concern about genetic technologies (Furr, 2002;
Tambor et al., 2002). Having been subject to discrimination, often based on ‘‘genetic’’ warrants, African
Americans may be more attuned to the potential for
eugenical genetic research.
The public expresses an array of concerns about
genetic research. Although the public has stated that the
benefits of genetic technologies probably outweigh the
risks (Priest, 2000), Table 1 shows that many people
believe that biotechnology also has dangerous potentials. Some scientists have claimed that this variety
proves public misunderstanding of genetic technology.
This claim is well refuted (Gansbacher, 2002; Gottweis,
2002 review this debate). Different responses are not a
result of public inconsistency, but of different questions
being asked by pollsters. Rather than asking the public
to pick one concern, we should be open to
letting multiple contexts influence the expression of
different answers to similar questions (Gottweis, 2002;
Schulman, 2003).
Genetic researchers should not disregard public
concerns. Genetic researchers should consider these
concerns carefully (Gill & Richards, 1998; Vines,
1997). The public often funds the research and is
expected to consume byproducts of the research. The
public is a stakeholder in the debate over what
constitutes ‘‘improper’’ genetic manipulation. To evaluate their claims, it is necessary to see what arguments
they articulate. In order to augment public opinion
polls, we conducted a series of focus groups to
investigate public understanding of genetics, which
allowed us to access the warrants behind public understandings of genetics.
Methods
To access public understanding of medical genetics, a
focus group methodology was employed. Participants
were 91 persons from Georgia recruited for nine focus
groups from February through March 2002. Participants were assigned to groups based on their selfidentified race. Five groups had persons self-identifying
as ‘‘Black’’ or ‘‘African American’’, one had persons
identifying as ‘‘White’’ or ‘‘European American’’, and
one had persons identifying as ‘‘Hispanic’’ or ‘‘Latino’’.
Moderators were matched by self-identified race for
these seven groups. In addition, two groups had
approximately equal numbers of African American
and European American participants. An African
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Table 1
Greatest concerns about genetic research expressed by the public in national telephone polls, reported in percentages
Concern
Wirthlin Quorum/
Gallupa
Los Angeles Timesb
Genetics and Public
Policy Centerc
Messing with nature/playing god
Long term results/possible side effects
Not enough testing/research
Cost/expensive/will only help rich
Potential to harm public
May be poor quality
Inexperienced people using the technology
Ethical considerations
Environmental concerns
Fear of the unknown
Replacing human life
Production/safety of food
Not government regulated
Effects on medicine
Does not last as long
Safety of the product—general
Can pick and choose baby traits
Destruction of creation theory
Discrimination in employment or insurance
Exploitation of genetic information
Loss of privacy
More abortions
Human cloning
Other/mixed
Not sure/do not know
No positive to genetic research
General negative
Do not worry
9
9
7
5
4
3
3
3
3
3
3
1
1
1
1
1
—
—
—
—
—
—
—
—
—
8
2
—
20
5
—
1
—
—
—
—
—
—
—
2
—
—
—
—
1
3
4
8
5
1
8
5
21
—
—
15
34
—
7
7
35
—
—
—
—
—
—
—
—
—
—
—
—
—
—
—
—
—
—
7
2
—
—
6
a
Question: What are the negatives regarding genetically engineered products? Multiple responses allowed, does not add up to
100.0%. Roper ID: USWIRTH.94MARA, R22, Feb. 1994. N ¼ 1005:
b
Question: What do you think is the greatest potential danger that you and your family might face from genetic research? First
response only recorded. Roper ID: USLAT.00443, R52, July 2000. N ¼ 1357:
c
Question: When you think about these topics (genetic testing, in vitro fertilization, genetic engineering, and cloning), which of the
following, if any, worries you mosty That using these technologies is too much like playing God, that the technologies are too new to
be used safely, that most people will not be able to afford these technologies, that the technologies can easily be used for the wrong
purposes, or don’t you worry about any of these? First responses only recorded. Roper ID: USPSRA.02GENET, R35A, Oct. 2002.
N ¼ 1211:
American female moderated one group and a European
American female moderated the other. Sessions lasted
about 2 h.
Participants were recruited by nomination from
community advisory boards in three areas (Atlanta, a
large urban area; Gainesville, a regional hub, primarily
agricultural, but in transition; and Athens, a university
town). Community advisory boards were first asked to
discuss what constituted their community. Then they
were asked to nominate individuals not on the board
who would represent the breadth of perspectives in their
community. Those individuals were then telephoned by
research team members and invited to participate if they
did not self-identify as genetics ‘‘experts’’. Participants
were offered $50 compensation.
Moderators employed a common series of questions,
which had been developed by the research team and then
reviewed and revised by the community advisory
boards. Moderators were encouraged to include follow-up probes or to revise wordings in questions to seek
full exploration of the issues by as many participants as
possible. Appropriate institutional review boards approved the study.
The data were analyzed through two procedures. The
data were first assessed through a standard quantitative
methodology that categorized and enumerated the
participants’ claims. These findings were then supplemented with a qualitative analysis of the data that
developed and presented the warrants used by the
participants. For the quantitative analysis, traditional
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market-based methods of focus group analysis were
followed (Morgan, 1988; Stewart & Shandasi, 1990).
The data were divided into 609 statements: the words
uttered from when one participant began speaking until
another participant spoke. A classification scheme was
developed based on readings of the transcripts. Two
trained coders independently examined each transcript
and coded participant statements into categories for
each outcome measure. The coded responses were
tabulated and the research team interpreted the findings.
Three main outcome measures were employed. The
first measure investigated the level of concern assigned
to genetic research. Responses were categorized into
four possible responses: discussing a concern about
genetic technology, discussing a benefit of genetic
technology, a condition in which both a concern and a
benefit were discussed, and a condition in which there
was no discussion of concerns or benefits. A Cohen’s
kappa (k) of 0.64 was calculated for intercoder
reliability. Differences were resolved by deferring to
the senior coder.
The second measure investigated 14 concerns named
or discussed by participants (k ¼ 0:76). These were
concerns about the following: racial discrimination
resulting from genetic research, genetic discrimination
in employment, genetic discrimination in insurance,
unequal access to benefits of genetic research, privacy,
governmental or corporate exploitation of genetic
technology, religious concerns, changes in familial
expectations, creation of a ‘‘master race’’, cloning as a
general category, ‘‘playing God’’, side effects or
accidents, and ‘‘other’’.
The third measure investigated the benefits discussed
by the participants. Although our question asked
specifically about concerns, the participants did not
separate risks completely from benefits. Participant
responses were sorted into three beneficial outcomes
(k ¼ 0:96): genetic research leading to better health
outcomes, genetic research including underrepresented
racial and ethnic minorities in research, and generalized
benefits of genetic research.
Traditional focus group analysis gives a sense of the
relative frequency of statements made (Morgan, 1988;
Stewart & Shandasi, 1990). Despite this advantage,
some researchers decline to perform quantitative analysis because the categorization of statements may strip
focus groups of context and to reduce their content
(Cunningham-Burley, Kerr, & Pavis, 1999; Myers &
Macnaughten, 1999). Therefore, these researchers present longer segments of focus group transcripts to show
conversational development and provide examples.
Nevertheless, purely qualitative presentations are limited
in that they tell only what kinds of things were said, not
how often the topics emerged. Following our quantitative analysis, we re-read the transcripts qualitatively. By
combining the two methods, our investigation is able to
335
outline the focus group conversations with quantitative
reporting and to fill in content through qualitative
reporting.
Results
Participants were asked to discuss their concerns
about the impacts of genetic technologies on individuals
and society. Given the polling data, we expected that
participants would discuss a variety of worries. Under
each outcome measure, multiple impacts of genetics on
individuals and society were articulated. Additionally,
many participants provided explanations of these
concerns and benefits. Differences in the kinds of
concerns and benefits identified by African Americans
and European Americans emerged from the data.
Participants
Ninety-one people participated in the study. Participants were 58 African Americans, 26 European Americans, and seven Hispanics; 57 were female and 34 were
male. Participants were recruited from urban (n ¼ 36),
suburban (n ¼ 42), and rural (n ¼ 30) communities.
Group sizes ranged from 7 to 11 individuals (M ¼ 10:1).
Participants ranged from 18 to 64 years of age
(M ¼ 33:8). Although educational levels ranged from
eighth grade (2.2%) to work on or the attainment of an
advanced degree (13.2%), most participants had some
college education or held a bachelor’s degree (59.4%).
Annual household incomes ranged from $10,000 to
$170,000; the median income was $50,000. The median
household income in Georgia is $39,910. All participants
provided written informed consent.
Does the public have concerns?
The first measure investigated the level of concern
assigned to genetic research. A substantial number of
statements were non-responsive (overall, 37.6%; African
American, 37.3%; European American, 37.1%; Hispanic, 42.2%), the remaining responses provide indicators
of how the public understands genetics. A majority of
participant statements indicate concern about the
implications of genetic research (59.0%, 57.8%,
57.3%, 48.9%, respectively). This finding is an artifact
of the question and should not be taken to mean that the
public generally expresses more concerns about genetics
than benefits. Instead, participants have a complex
understanding of the implications of genetic research.
Participants feel free to express benefits of genetic
research even when specifically asked to discuss concerns.
Our participants named benefits alone (2.1%, 2.1%,
2.6%, 0.0%) as well as combinations of concerns with
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B.R. Bates et al. / Social Science & Medicine 60 (2005) 331–344
benefits (3.3%, 2.7%, 3.0%, 8.9%). This finding may be
important to the public’s understanding of genetics, as it
indicates that the public is likely to weigh the complexity
of genetic research.
companies would
from coverage.
Similar claims
conversation in
shows arguments
discrimination:
use genetic testing to exclude people
were made about employers. A
one of our integrated group
used to support a fear of genetic
What are the public’s concerns?
The public’s discussion of concerns about genetic
technology reflects this complexity. Our second measure
investigated the specific concerns discussed by participants. Many of the concerns named by the participants
overlap with those reported in polls (see Table 2). In
addition to naming concerns, the participants also
included warrants for their worries.
All groups expressed concern about the possibility for
using genetic data to discriminate in employment or
insurance. The concerns about genetic discrimination in
insurance were summarized in a conversation in our
European American group. After being asked what
concerned them, respondent 8-201 said, ‘‘I think
insurance discrimination. Perhaps they find you have a
gene that you’re more likely to develop a disease later on
or have more medical problems perhaps insurance
companies would’’. Here the moderator asked for
clarification and other members of the group helped to
do so. Respondent 8-201 said, ‘‘yea, they might deny
you, they might discriminate against’’ people with
genetic markers, while respondent 8-203 claimed insurers might ‘‘charge more money for your plan’’ if you
had a genetic marker. The participants were aware that
genetic information might disproportionately impact
those with genes that marked them for a genetic
condition. By comparing genetic testing to insurance
policies limitations with which they were familiar, our
participants provided warrants for why insurance
2i-212: I think just too, like in the job market, if they
could genetically test you and see if you’re predisposed to cancer or whatever, they might not want to
hire you because you might raise their health
insurance. Or they could discriminate against you
because they could decide you were more sickly or
you were predisposed to be sickly. I mean, you know,
you could be just, you know, they could like run a
test on you or if they could find out then they could
decide you were a risk.
2i-204: Like if you had a family history of heart
disease.
2i-212: Yeah.
2i-204: They’re already drug testing right now. So
genetic testing but, once you discriminate against
somebody on the basis of the ability to get a job just
because they’re missing a particular trait that the
employer thinks they need to have to perform a
function.
By crafting an analogy to drug testing as a prerequisite to employment, the participants indicated that
genetic discrimination in the workplace would be
unavoidable. This analogy allowed the participants to
use the ubiquity of drug testing to show that genetic
testing would also become commonplace.
In addition to fears of genetic discrimination, African
American participants were likely to fear racial discrimination from genetic technology. Participant 12-110
Table 2
Focus group participants’ statements about concerns arising from genetic research, reported in percentages
Concern named
African American
European American
Hispanic American
Racial discrimination
Genetic discrimination in employment
Genetic discrimination in insurance
Unequal economic access to benefits
Privacy concerns
Government or corporate exploitation
Offense to religion
Changes in familial expectations/designer babies
Creation of a ‘‘master race’’
Generalized cloning
‘‘Playing god’’
Side effects/accidents
Other
23.0
11.5
4.0
11.5
3.5
8.5
4.5
9.0
3.0
7.0
5.5
2.5
6.5
10.0
10.0
4.3
8.6
3.6
13.6
6.4
25.7
0.7
7.1
5.30
2.9
2.1
23.1
11.5
0
3.8
0
3.8
19.2
26.9
0
0
7.7
3.8
0
Note: N ¼ 366 statements, k ¼ 0:76:
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B.R. Bates et al. / Social Science & Medicine 60 (2005) 331–344
claimed that genetic research would provide an excuse
for people who wanted to practice racism. She said,
‘‘People discriminate for lots of reasons. So of course,
they would justify it if they had some medical basis or
some genetic, hereditary thing that they could tie into’’.
Other participants, such as 9-110, agreed. She argued
that:
if they find things and then once they ever unlock
the door to DNA or whatever, they find things
that maybe specific to one race or whatever. I
mean, for whatever reason they may be able
to use that for discriminatory purposes, I don’t
know. Like jobs, well this person may be more prone
to this because he’s Black, so we don’t want to hire
him or we don’t want him for this job or something
like that.
Experiential knowledge of racism was applied to a
new arena. Because they had seen discrimination in the
workplace, our participants indicated that genetics
would become grounds for additional discrimination.
Other participants drew on what they perceived
as past racist acts in medical research to justify their
belief that genetic research could lead to racial
discrimination:
8-114: Let’s be realistic. They want to make Blacks
have most anything more than anybody, any other
race.
Moderator: In what sense?
8-114: In medical problems. No matter what it is or
how it is. I know they’ve done studies to know what
it is but it just seems like every disease comes out is
prevalent among Blacks.
8-106: It starts with us.
8-110: Did AIDSyI mean. I don’t remember
buty
8-104: They wanna sayy
8-114: They want to say it started in Africa. Even
though it may not have, I really don’t know, but this
is what they say. They want to associate it with us
anyway.
Some African American participants suggested that a
biased medical community has blamed emergent diseases on Africa. This bias, some African Americans fear,
could be extended through genetic research so that
genetic diseases would become associated with African
Americans. By crafting the analogy between genetic
conditions and HIV/AIDS, these participants justified
their belief that genetic research could lead to racial
discrimination.
Both African Americans and European Americans
were likely to be suspicious of government or corporate
exploitation of genetic technologies. For example, 9-116,
337
an African American female, asked a series of questions
to indicate her concerns. She asked:
How much of, the government, how much is the
government going to know? What impact is that
going to have on my future, my kid’s future, my
grandchildren, that sort of thing? Will we be—what
am I going to call it—not susceptible? Will we be
tracked according to that? And will they be able to
put my social security number in and pull up—not
that they can’t now—but you know, how much of
that the government would have control over?
One African American female, 10-112, suggested that
these concerns were common. African Americans, she
claimed, were likely to resist medical research because
the government had performed research in racist ways in
the past. 10-112 indicates that, for medical research,
‘‘there tends to be a lot of the problems with the
minority groups; it’s a lack of knowledge or lack of trust
in the medical field, because of, I know with Blacks, with
Tuskegee, that happened years ago. A lot people just do
not trust being in research studies because of that one
thing’’. These participants used history to back their
claims that governmental exploitation was possible.
Other participants were less concerned about governmental exploitation and more concerned about corporations. For example, 8-203, a European American male,
stated that corporate exploitation had already begun.
He said, ‘‘they’ve already got it all, they’ve already got it
all um, copyrighted, you know trademark and all that.
So the ones who do the research they are going to have
all the money anyway, so you’re going to have to pay for
it’’. Several participants said that it was the nature of
corporations to exploit innovations. Two interchanges
support this logic. The first is from a male and two
females in an African American group:
8-101: I think that when you talk about something
like that we’re all subject to be used as guinea pigs.
8-106: Have to experiment somewhere.
8-116: Especially if there’s money to be made.
Likewise, after being asked if they were concerned
about scientists and corporations using blood samples
for their own profit, an African American female
indicated that they would. Two European American
males agreed with her. The conversation took place as
follows:
1i-110: They would [take advantage]. They definitely
would.
M: Why do you think that?
1i-110: Because it’s all about moneyy that’s why.
1i-201: They’re corporationsy corporate America.
1i-207: That’s why they are in business.
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In short, the participants felt that corporations would
exploit genetic technology because it was in the
corporations’ nature and interest to continue to do so.
These participants used a working knowledge of
capitalism to show why corporations would try to
exploit the genome.
Participants were concerned about government access
to genetic information. They were also concerned about
their own ability to access the fruits of genetic
technology because of economic inequalities. Drawing
on his experience with different insurers, one African
American, 11-101, wondered if there would be equal
access. He asked,
Would it be discriminatory against income levels, as
far as would it just go to the rich people that can
afford expensive research or will it go to different
levels in general? y Will the lowest income level be
deprived of health benefits, as far as the assistance of
the new genetic code that could probably kill cancer?
Would it be available? What would it take? I mean,
because if you have an HMO these days, they don’t
really get into new stuff like this right here. You have
to have cash money available.
Other participants were similarly concerned. Participant 8-205, a European American, thought that profitmotivated researchers would make the products too
expensive. He created this scenario:
Someone finds, through genetic research, some
discovery that will help all humanity and they give
it to themselves. And they discriminate. Other people
that might need that type of carey Perhaps just the
upper class, you know, they might be the only ones
that have access to that, the benefits of that research.
That is, only the rich could afford to pay the
researcher’s price. Participants drew on a general
awareness of how socioeconomic status affects one’s
ability to obtain health care. They warranted their
concerns by showing how economic inequality had led
to unequal access in the past.
Access concerns were not limited to issues of
affordability. Participant 11-101, an African American,
indicated that in addition to purchasing power, people
with political power would be more likely to benefit than
‘‘ordinary’’ people were. He thought that a person
would be more likely to be treated ‘‘if you’re into a level
of government where you know that particular research
is going on. Someone like the President or someone in a
higher, Secretary of State, whatever, can actually get
tested’’, whereas most people cannot get tested. This
unequal access was not only unfair, 11-101 continued,
but made the technology less effective. 11-101 argued
that ‘‘this could be research that, if all eyes were open, it
could be really effective, but I really think a lot of this is
closed off to society’’. With appropriate reforms and
better publicity for the research, this participant thought
that genetic science could be used to improve the lot of
all, not just the politically advantaged.
Several European American participants were concerned that designer babies might become possible.
European Americans were significantly more likely that
African Americans to express fears that, when it became
possible to choose a child’s traits, it would lead to
individual and social unhappiness. A conversation in
one of our integrated groups reflects these worries well:
2i-212: Well, I think too, what genetics is taking out
of the equation is human, just humanness. It’s like
the concept that you could just construct this child
that would almost be like a robot or can construct
something.
2i-207: Programming a life.
2i-212: y It’s almost like diversity isn’t okay,
because everybody, of course, is going to want to
pick the child with the 1000 IQ or whatever. y
2i-204: But then you’re getting into a Brave New
World situation. Did anybody read that book in high
school? y The whole background of the book was
they had created all these perfect people, but then
there was nobody—Everybody wanted to be a
scientist or an engineer and nobody wanted to be
the janitor, or to do the really nasty work, work at
the Burger King for 30 years and they needed people
to do that. So then they started a situation where they
engineered scientists and engineers and then they
engineered, in the womb, kids who would be short,
retarded, whatever. The people to be like the bottom
level of society so they not only engineered a top
level. They engineered deliberately a bottom level of
societyy
2i-207: Who are we to create something like that?
2i-111: Yeah, that’s the question.
2i-207: Who are you to do that? Who gives you
that right to create that? What if that kid grows up
and doesn’t, for whatever reason, doesn’t want to be
that thing that he was programmed to be?
These participants valued genetic diversity and disagreed with creating a permanent genetic underclass.
These participants found situations in fiction that were
analogous to possibilities resulting from genetic manipulation, drew lessons from the texts, and used them as
warrants.
In addition to these concerns, the participants noted
concerns about the privacy of their genetic information,
religious problems raised by genetic technology, and
generalized concerns about cloning. Some participants
disapproved of genetic research because it was ‘‘playing
God’’ or ‘‘messing with Nature’’. Participants indicated
that genetic science also presented risks to society as a
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339
disease. Only African Americans named a second
benefit, that genetic research would benefit African
Americans by requiring that African Americans be
included in research protocols.
All groups indicated that genetic research would lead
to new treatments and better understandings of diseases.
These participants often paired this benefit with a
statement of concern. For example, an African American female, 11-102, indicated that she was opposed to
frivolous genetic engineering, but thought it might be
good to engineer diseases out of the genome. She said,
whole. Participant 2i-201, a European American,
likened genetic science in the present to atomic
science in the 1940s and 1950s. 2i-201 urged others to
consider science’s unintended consequences. After
agreeing with other participants that genetic science
would allow better disease identification and treatment,
he stated,
you can fix problems before they become problems,
but there is always going to be people [who] take
advantage of it. I mean, look at the atomic bomb;
this is a very good example. We’re going to use it for
mankind, for peace, and, you know, we had the Cold
War for how many years in this country with Russia
because there was somebody standing there that
could push the button.
if you knew there was a certain type of gene that
would give you brown eyes or a certain type of gene
that would give you green eyes, I don’t think it
should be used that way. But I think if medically it
was used to maybe cure a disease or if it was some
type of disorder or something, I think that would be
great.
Like atomic science, 2i-201 felt that genetic science
could be converted into a threat to humanity. In
addition, it was not the scientists who were directly
responsible for the Cold War but political actors who
used the fruits of science for ideological ends. By
recalling the danger posed by the Cold War, 2i-201
provided sufficient reason to wary of future Cold Wars
that could be engendered by the military and ideological
applications of genetic science. Participants also feared
calamitous impacts beyond geno-weapons. These impacts included the creation of a ‘‘Master Race’’, the
possibility of accidents such as antibiotic resistant
bacteria, and mutant creations that could escape the
laboratory. Although these concerns were not as
common, the participants generated warrants for
articulating them as concerns.
Participants rejected some kinds of genetic research
while accepting others. An African American male, 12101, reported, ‘‘I’m for genetics. I think on certain
issues. I’m not too keen on this cloning or anything like
that, but, you know, when they get together and search
for other things to combat some of the other diseases
that we have been coming up with, I’m for it’’. In other
words, while cloning might be improper manipulation,
disease treatment was a benefit. These participants used
warrants drawn from cost–benefit analysis to judge the
acceptability of genetic manipulation.
This kind of weighing was common. Following an
extended discussion of cloning where participants
debated whether cloning was medically necessary or
‘‘playing God’’, 11-112, an African American female,
worked to balance utility with morality. Although there
were some applications of cloning technology that she
felt were acceptable, other applications were not. She
stated that researchers:
What benefits do the public see?
In addition to providing concerns about genetic
research, our participants also expressed benefits.
Our third measure investigated the specific benefits
discussed by the participants. We include this finding in
Table 3 because it shows that, even when asked
about their concerns, participants do not completely
divorce the benefits of doing research. Participants
in our study named two specific benefits. European
Americans and persons of color both claimed
that genetic research could lead to treatments for
started out saying they wanted to be able to produce
organs and I, you know, felt good about that. I said,
‘‘Well, that will help somebody who can’t get a
kidney’’, when people are on dialysis because they
can’t get a kidney. So, I felt, well, if they can make a
duplicate kidney to help somebody, I felt good
about that. But then when they were talking about
humans and cloning, cloning humans, then I started
Table 3
Participants’ statements about benefits arising from genetic research, reported in percentages
Benefit named
African American
European American
Hispanic American
Prevention and treatment of genetically linked disease
African americans benefit from inclusive research protocols
Other
66.7
27.8
5.6
81.8
0
18.2
75.0
0
25.0
Note: N ¼ 33 statements, k ¼ 0:96:
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thinking, ‘‘Well wait a minute. How far are we going
with this?’’
For this participant cloning organs was acceptable. By
combining her knowledge of a problem, i.e. the lack of
available organs, with her awareness of the promises
made by genetic scientists, 11-112 concluded that organ
cloning had utility. When it came to reproductive
cloning, though, 11-112 decided that this application
carried too many ethical and moral concerns. This
comment also appeared to settle the discussion, as no
participant attempted to clarify or respond to 11-112’s
balancing act. As the development of this discussion
indicated, our participants did not simply accept or
reject cloning but chose, instead, to consider particular
types and applications.
Our participants also raised religious concerns, but
addressed these concerns as well. One female Hispanic
participant, 1-306, reported that the potential medical
advantages moderated her religious worries:
1-306: Of course it’s going to affect the people and
the faith, but I think, it’s, ok, it’s nothing bigger than
God. If the scientific exists, it’s because God want it
to exist. We can’t stop the evolution, we can’t stop
the evolution, that will be, I think that will be very
good because they gonna’ preventy.theyI don’t
know how to sayyenfermedady (continues in
Spanish) y
Moderator: So, let me see if I’m interpreting what
you’re saying: what you’re saying is, this is not bad
because this will help prevent certain illnesses or treat
certain conditions, but, in relation to God, God is
almighty and He’s the beginning and end of everything, even science. Is that what you’re saying, P306?
1-306: Yes. Yes.
That is, because there were beneficial results from
genetic research, it could be accepted as a boon from a
Prime Mover. Although she does not discuss a ‘‘Book of
Nature’’, the warrant is similar. Because genetic research
investigated Creation, and because it could be used to
better humanity, this participant felt that genetic
research was an expression of God’s will.
In addition to noting the potential for the identification and treatment of disease, African American
participants claimed that genetic research could increase
the participation of persons of color in medical studies.
Medical research would become more inclusive and lead
to better medications. Participant 10-110, an African
American, suggested that studies that did not take
genetics and race into account were misleading. She
claimed that a non-inclusive study:
can’t be an accurate study because you’re not
including all demographics. You’re not including all
races. Not including everybody. You’re limiting
yourself, if I’m correct, listening to you correctly, to
the Caucasian mostly. You may, you may slide one
or two of us in there every now and then, you know,
but you’re still not going to get an accurate reading,
because it’s not a balanced scale.
Research that represented persons across races,
however, was seen as more accurate. This participant
used her knowledge of the principles of statistical
representation to warrant her claim that inclusive
medical research was necessary.
Research that included persons of color was accepted
by many of our respondents. Genetic research could be
used for race-based pharmacogenomics. For example,
an African American male, 11-103, drew on his
experience from participating in a hypertension study.
He said, ‘‘I have a problem with hypertension and I
participated in some studies, which not necessarily
because of our lifestyles, but because of our genetics
that we are predisposed to have a certain condition’’.
Based on his participation, 11-103 reported that ‘‘certain
medications and certain studies catch my attention and
certain ones that are, say, geared towards African
Americans or geared towards people with certain
principal make-ups’’ did so the most. 11-103 applied
this experiential knowledge to research in pharmacogenomics. Because he had taken part in a hypertension
study, this participant believed that medications could
be developed that worked better for persons of one race
than for those of another.
Discussion
Our research indicates that the public articulates
complex understandings of genetic research. The participants evaluated general concerns and benefits as well
as concerns and benefits about specific applications.
In addition to having a complex understanding, the
lay public also appears to have an informed
understanding. An informed understanding does
not mean that the general public has sought out
advanced coursework. Although they are unlikely to
cite the latest research, our participants applied a general
knowledge of the scientific method. They also drew
analogies between historical events and likely outcomes
of research. Our participants drew on their experiences
as patients and as taxpayers to discuss the policy effects
of genetic research. In addition, our participants drew
on common knowledge of how governmental and
economic actors operate in a liberal democratic order.
In their discussion, our participants drew on events in
the news, high school or college classes, and fiction to
interpret genetic technologies. By using these sources,
the public generated warrants for their positions.
These warrants—analogic reasoning, experiential under-
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standing, and the deployment of cultural narratives—
allowed our participants to connect shared knowledge
with their claims.
Although our findings agree with previous studies
that the public has concerns about and can name
benefits from genetic research, our findings indicate
that the public also articulates warrants for their
beliefs. For example, the concerns and benefits
named were similar to those in Macer et al.’s
(1995) study. In both cases, the public disapproved of
‘‘designer babies’’, but approved of manipulation to
correct for disease. Our findings suggest that the public
has good reasons to disapprove of the former and to
approve of the latter. Although they do not use technical
language, our participants used history and literature to
distinguish between ‘‘designer babies’’ and medical
interventions. Similarly, Vines (1997) notes that the
public is aware of the potential for social stigmatization.
Our study expands Vines’s claim that the public is
incorrectly deemed uninformed by providing access to
the reasons given by participants. Our participants drew
on everyday experiences of discrimination to support
their arguments. Our other findings agree with the
results of prior studies and of public opinion polls. Our
addition is simple: the public does not just have opinions
about genetic research, they give warrants for their
opinions.
In addition to a reasonable and reasoning public,
our results indicate that different segments of the
public may express different concerns and benefits.
All ethnic groups indicated concerns about the
potential for genetic research to lead to genetic
discrimination. African American participants, however,
were more likely to be concerned that genetic research
would encourage discrimination on the basis of race
than were European Americans. African American
participants were more likely to talk about the media
blaming African Americans for emergent diseases than
were European Americans. Drawing on these experiences, as well as a sense of generalized racism in the
United States, African American participants articulated sufficient reasons for their concerns. African
American participants, however, were also likely to
point out benefits to African Americans. Genetic
research would include African Americans in research
protocols and better medical treatments for African
Americans would result. Although there were substantial concerns about racism, our African American
participants also recognized that looking at race
seriously through genetic research could bring advantages.
Whereas African Americans were more concerned
about racism, European Americans were more likely to
express concerns about the creation of genetic classes. In
articulating these concerns, European Americans drew
on fictional accounts of genetic hierarchy, such as Brave
341
New World and Gattaca, rather than actual experiences.
This difference, when counterpoised against African
Americans’ greater concern about racism, may indicate
a difference in how hierarchies are discussed by the two
groups. ‘‘Genetic’’ warrants have been used in American
history to segregate African Americans from European
Americans and to justify White control over Blacks
(Hasian, 1996). African Americans, having been placed
in subordinate positions as a group, may be more likely
to interpret genetic research in terms of that experience.
European Americans, as a generally advantaged group,
may lack this collective understanding. European
Americans’ concerns and African Americans’ concerns
may be coordinate concerns, not separate ones. The
reasoning behind each, however, gives a different flavor
to the concerns. European Americans’ concerns exist in
the future; African Americans’ concerns are an extension of present problems. Although neither concern is
irrelevant, the concern expressed by African Americans
is more immediate.
Implications
The lay public has concerns about genetic research.
The public also recognizes potential benefits. More
important, the public offers reasons for being concerned
and for recognizing benefits. If the lay public is taken
seriously, and their concerns are not dismissed as being
uninformed or irrational, these findings have important
implications for the way that advocates of genetics and
allied fields should consider the public.
Genetic researchers have recognized that their field
faces a rhetorical problem for some time. In the last five
presidential addresses to the American Society of
Human Genetics, the Society’s president has acknowledged that the American lay public often understands
developments in genetic science differently than members of the scientific community. Huntington Willard
(2002, p. 292) seems to capture this view when he said,
‘‘there is an entire world going on outside our tent. Our
voice is strong and resonant in the tent, but we are less
effective at being heard outside’’. Although each
president of the Society has urged a campaign of public
education to contract this gap, education may not lead
to public acceptance.
A strategy of public education that relies on
disseminating information is likely to fail on two
counts. First, there is not a direct relationship
among having information, understanding, and accepting genetic science. Survey research demonstrates
that more (or even better) information about
genetics does not necessarily influence public understanding (Henderson & Maguire, 2000; Morris & Adley,
2001). The second reason is that the strategy may
respond to public arguments at the wrong level.
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Although additional data may be provided, if these data
do not mesh with the warrants that a person employs,
the person will not consider these data relevant. In the
case of genetics, if the data used to educate the public is
understandable only through warrants based in scientific
methodologies, the public may consider these data
irrelevant.
The participants in our focus groups suggest
that supplying more data may not be persuasive or
effective in shaping public understandings of genetics.
Rather than presenting more data, genetic scientists may
want to present more relevant data to the public.
Advocates of genetics could present data that responds
directly to data filtered through public warrants. The
public is able to articulate good reasons for being
concerned about the implications of genetics. As such,
geneticists and allied researchers may wish to take action
to address these concerns and report on these actions.
For example, geneticists could enforce a strict code of
ethics that forbids the exploitation of genetic samples
without the patient’s permission. Medical practitioners
can show how they physically and electronically secure
medical records so that insurers and employers cannot
use the results of genetic tests to discriminate. Researchers who find different response rates between European
Americans and African Americans to particular medications can discuss their results more carefully so that
racist interpretations of the findings become more
difficult. These steps, and other practical actions, could
be taken to help allay public concerns about genetics
research and make them more likely to accept its
products.
In addition to addressing concerns by reporting
new data directly responsive to public warrants,
advocates of genetic may want to draw attention to
existing data that already fits these warrants. If everyday
experience is used as a warrant for thinking about
genetic medicine, the data of bad interactions with
medical providers cited by our participants could be
rebutted with positive personal experiences. When
analogies to popular culture, such as Gattaca, are cited
as reasons to fear developments, analogies to the future
offered by Star Trek may be useful for arguing through
the same logic. If historical analogies are used, each
instance where a Tuskegee Study is recalled can be
answered with references to Salk’s work on polio. And,
when cost–benefit-analysis is used, admitting the costs of
genetic research may allow the genetic advocate to
emphasize the economic, social, and other benefits
linked to the study of genetics. Advocates of genetic
research may want to allow public understanding to
shape the arguments that they make. Should genetic
researchers and allies treat their public as interlocutors
instead of as students who need facts, these researchers
may find that their work becomes more acceptable to the
public.
Limitations
We have several suggestions for allaying public
concerns about genetics and for emphasizing the benefits
of genetic research. Limitations to the current
study should be addressed also. Focus groups are a
good method for gaining depth in participant responses;
they allow the development of discussion and they
let participants introduce ideas the researchers have
not considered. Yet, focus groups are not fully
representative. Although our sample is fairly diverse,
greater diversity in the participants would deepen our
understanding of public concerns about genetic research
and the benefits that different population groups
perceive. In the United States, a person’s ethnicity may
have an effect on his or her perceptions of genetic
science (Bates, Poirot, Harris, Achter, & Condit, 2004).
As such, the small number of Hispanics, Native
Americans and Asian Americans in the present study
could be expanded to encompass more ethnic diversity
in the lay public.
In addition to revisiting the stakeholders concerned in
this study—the generalized lay public—other stakeholders could be asked to participate in a discussion of
their concerns about genetic research and the benefits
that they perceive. Research conducted in the United
Kingdom, Europe and Australia indicates that interested publics, as subsets of the general public, are likely
to express concerns and identify opportunities unique to
their experiences (Barns et al., 2000; Kerr et al., 1998).
These interested publics would include geneticists,
persons with genetic conditions, medical practitioners,
farmers who grow transgenic crops, policymakers, and
other groups that have an investment in genetic
research. The participants in our focus groups were
not necessarily interested publics and, unlike most
participants in studies of interested publics, did not
know each other beforehand. Members of interested
publics may express concerns that differ from those
expressed by the generalized lay public. Each community may also emphasize different benefits. If there is
greater research into the views of all stakeholders in
genetic research, common ground for a true national
discussion of the implications of genetic research can
take place in the United States.
Ultimately, we all are stakeholders in genetic research.
The views of experts and the lay public should be
brought into this conversation. Only then is there the
greatest likelihood that concerns can be addressed and
benefits for all can be maximized.
Acknowledgements
The authors acknowledge the contributions of Roxanne Parrott, Tina M. Harris, Paul Achter, Nneka
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Ofulue, Amy Reeder, Cynthia L. Dietz, Tonia East,
Alison Trego, and Tasha Dubriwny to this project. This
project was funded by the National Institutes of Health
(HG02191-02).
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