Human Reproduction, Vol.24, No.5 pp. 1106– 1113, 2009
Advanced Access publication on January 24, 2009 doi:10.1093/humrep/den496
ORIGINAL ARTICLE Psychology and counselling
‘Not taken in by media hype’: how
potential donors, recipients and
members of the general public
perceive stem cell research
V.L. Peddie 1,4, M. Porter 1, C. Counsell 2, L. Caie 2, D. Pearson 3,
and S. Bhattacharya 1
1
Obstetrics and Gynaecology, Division of Applied Health Sciences, University of Aberdeen, School of Medicine and Dentistry, Aberdeen
AB25 2ZD, UK 2School of Medicine and Dentistry, University of Aberdeen, Aberdeen AB25 2ZD, UK 3Department of Endocrinology,
Aberdeen Royal Infirmary, Foresterhill, Aberdeen, UK
4
Correspondence address. E-mail: [email protected]
background: Views of embryo donors, scientists and members of the general public on embryonic stem cell research (eSCR) have
been widely reported. Less is known about views of potential beneficiaries of stem cell therapy and the influence of media ‘hype’ on perceptions of eSCR among different groups of stakeholders. This study aimed to examine the perceptions of members of the general public as well
as two patient groups likely to benefit from eSCR and to explore the role of the media in shaping these views.
methods: A qualitative study carried out in Aberdeen, Scotland included 15 people living with Parkinson’s disease (PD), 15 people living
with diabetes mellitus (DM), 15 couples with infertility and 21 members of the general public who volunteered for the study. Interview transcripts were analysed thematically using grounded theory.
results: The two patient groups likely to benefit from eSCR in the future differed in their knowledge (mainly gained from the media) and
understanding of eSCR. Those living with PD were older, more debilitated and better informed than those with DM who showed limited
interest in potential future benefits of eSCR. Infertile couples learnt about eSCR from health professionals who explained the process of
embryo donation to them, and had sought no further information. Most of the general public had accessed information on eSCR and believed
themselves to be more discerning than others because of their objectivity, intelligence and ‘scientific awareness’. Although, the media and
internet were primary sources of information for all except couples with infertility, members of all four groups claimed not to be taken in by
the media ‘hype’ surrounding eSCR.
conclusions: Those who expected to benefit from eSCR in the future as well as members of the general public differ in their
susceptibility to media ‘hype’, while believing that they are not taken in by exaggerated claims of benefits. As respondents were a selected
group who were not drawn from a representative sample, the findings cannot be generalized to a wider population.
Key words: stem cell research / qualitative study / perceptions / information seeking / media influence
Introduction
Embryonic stem cell research (eSCR) seems to offer hope to those
living with chronic or degenerative disorders such as muscular dystrophy (Halban et al., 2001; Hamilton, 2003; Nierras et al., 2004) diabetes mellitus (DM) (Hamilton, 2003) and Parkinson’s disease (PD)
(Ben-Hur, 2006). Recent reports of success in reversing diabetes by
islet transplantation have led to optimism about the potential benefits
of eSCR (Shapiro et al., 2000; Diabetes UK, 2006). It is also hoped
that stem cell lines could be used to create cells and tissues which
can replace those which have degenerated in PD (Landry and
Zucker, 2004; Ben-Hur, 2006). Human embryos used to derive
stem cell lines are those remaining at the conclusion of fertility treatments that would otherwise be discarded or cryopreserved (frozen)
for future use. Their destruction during the process of eSCR is a controversial issue (Landry and Zucker, 2004; Devolder, 2005) which has
generated unprecedented media and political attention (Dresser,
2005). Other sources of stem cells such as cord blood (Fernandez
et al., 2003; Giacomini et al., 2007) which might obviate the need to
use human embryos have been investigated, but the scientific
& The Author 2009. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. All rights reserved.
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Media influence and perceptions of stem cell research
consensus so far is that haemopoietic stem cells are incapable of longterm self-renewal (Brunstein and Wagner, 2006), unlike embryonic
stem cells that remain the best research and therapeutic resource.
Dramatic press headlines are often used to draw attention to the
potential of eSCR to benefit those suffering from conditions such as PD
and DM. These articles may cause confusion about the different terms
used and processes involved (Sherley, 2008), and raise unrealistic expectations. Hess and Borlongan (2008) have questioned the degree to which
effectively treating such chronic debilitating diseases is a realistic possibility,
while others warn against premature therapeutic application without
proper clinical trial, regulation and guarantees of success (Snyder and
Olanow, 2005). Nisbet (2005) argued that increasing ‘awareness’ about
controversial research encourages public support but does not change
pre-existing religious or ideological values. In a large quantitative study,
Critchley and Turney (2004) found that members of the general public
(GP) in Australia were ‘comfortable’ with research on adult stem cells,
but not on cells created by cloning. Several studies have investigated
how the scientific community (Gardner, 2002) and members of the
public feel about scientists and enterprises involved in eSCR (Nisbet,
2005; Critchley, 2008). Embryo donors’ motivations have been widely
studied as demonstrated by Hug’s (2008) review of 67 studies of
couples considering donating supernumerary embryos. Despite the wellreported controversy about how stem cells are obtained and used, the
influence of media hype on the views of potential recipients and the
general public is not widely known (Sturgis et al., 2005). Relatively little
work has been done on individuals with chronic conditions who stand
to benefit in the future, and who may be seen as having a vested interest
in the outcome of such research. Many of them may find it difficult to
reconcile the optimism about eSCR portrayed in the media with the
more conservative stance of their clinical care providers. The media
acts as a conduit for information transfer between the scientific community on the one hand and patients and public on the other hand. Media
report colour public perception of events and stimulate discussion
about controversial scientific advances (Nisbet, 2005; Critchley, 2008).
Thus, it is important to explore the extent to which the media are influential in moulding the opinions of stakeholders whose views have a role in
shaping future government policy towards eSCR.
The study examined the influence of media on perceptions of eSCR
among four groups of participants. These included potential donors
and future recipients as well as members of the general public. The
objectives were to assess individual respondents regarding: (i) main
sources of information and reasons for accessing it; (ii) knowledge
and understanding of eSCR and (iii) perceptions of the way that
scientific advances in eSCR are reported by the media.
Methods
This qualitative study used in-depth interviews to ascertain the perceptions
of individuals representing four selected stakeholder groups after receiving
approval from the North of Scotland Research Ethics Committee. Patient
categories were selected on the basis of recent reports that PD and diabetes might be two of the first medical conditions to benefit from stem cell
transplantation (Ben-Hur, 2006).
Study population
Potential participants of both genders living with either PD or DM were
selected and invited to participate by the relevant consultant. We included
as wide a range as possible of demographic characteristics and experiences
in order to maximize variation in responses. For example, PD participants
were subdivided by age (60 and .60), gender and disease stage
(recently diagnosed uncomplicated PD versus longer duration PD with
motor complications), and equal numbers of participants from each subgroup were identified. People with cognitive impairment were excluded.
For 6 of the 15 living with PD and 2 of the 15 living with DM, interviews
were conducted in the presence of a carer (n ¼ 2) or family member (n ¼ 6)
who sometimes contributed their own opinions to the interview.
Couples attending the Aberdeen Fertility Centre were invited to participate on the basis of considering or consenting to the use of their ‘poor
grade’ or ‘surplus’ frozen embryos for eSCR. Between August 2007 and
January 2008, 42 couples were approached, and 15 of the 34 who
agreed to participate (81%) were interviewed consecutively. Our intention
had been to interview each couple together as the creation of embryos
and decision to donate or not has to be mutually agreed, but
circumstances meant that 1 of the 15 couples was interviewed separately.
Members of the general public were recruited via advertisements in
general practices, libraries, shops and university internet websites and a
local press/radio news release between May 2007 and February 2008.
Those responding were posted information about the study and a
consent form. Interviewees were recruited consecutively from those
agreeing to participate, but there were insufficient numbers to allow selection on the basis of age, gender, religious orientation or other social
characteristics. As it emerged that respondents were largely favourable
to eSCR, existing participants were asked for help in finding those who
were opposed to eSCR (snowball sampling), but this yielded only one
extra respondent. Recruitment stopped when 21 people had been interviewed and no new themes were emerging from analysis.
Data collection
Data were collected through semi-structured interviews using ‘aides
memoire’ specific to the relevant groups. ‘Aides memoire’ list topics to
discuss—rather than questions—which allow relevant issues to be
pursued in a naturalistic manner as they arise during interviews. These
were developed on the basis of a review of the literature, pilot interviews
with people living with PD (2) and DM (2) and a scoping exercise with professionals working in this area. This highlighted the importance of media
interest in medical research in general, and its effect on patients’ requests
for novel information and procedures. The substantive topics discussed in
interviews are shown in Appendix I; they lasted 30 min on average and
were audio-recorded and transcribed verbatim.
Data analysis
The data from the transcripts were analysed thematically by hand
using grounded theory methodology and constant comparative analysis
(Charmaz, 2006) which allows theoretical explanation of meanings and patterns in the data to emerge during analysis. The strategy involved taking one
piece of data (one idea, one statement, one theme) and comparing it with
all other relevant instances in order to develop conceptualizations of the
possible relations between various pieces of data. A second researcher
(M.P.) coded all transcripts separately and any discrepancies were discussed
along with emerging themes and interpretations of the data.
Results
Table I shows the age, gender and occupational status of participants
grouped according to category and gives some details about the onset
of disease in those living with PD or DM. Although participants were
interviewed individually, for purposes of presentation, we refer to
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Peddie et al.
Table I Characteristics of respondents
People with
PD (n 5 15)
People with
DM (n 5 15)
People with
INF (n 5 15)
General public
(n 5 21)
.............................................................................................................................................................................................
Age range
38–84
15– 57
25– 41 (female)
18– 72
Mean age
59.1
36.0
34.8 (female)
48.0
Sex
7 males
7 males
1 female
9 males
8 females
8 females
14 couples
12 females
In paid employment or full time education
8
12
15 males
14
Years since diagnosis range and (mean)
2 –30 (6.9)
5 –33 (13.9)
n/a
n/a
Have complications
8
5
n/a
n/a
15 females
PD, Parkinson’s disease; DM, diabetes mellitus; INF, infertility.
those living with PD (PD group), those living with diabetes (DM
group), infertile couples (INF group) and members of the general
public (GP group) and use m/f to indicate whether participants
were male or female.
Interest in SCR and sources of information
The four stakeholder groups differed greatly in both their interest in
eSCR and their attempts to find out more about the subject.
Almost all of those living with PD had gone out of their way to
search the media for information on SCR and some also had
friends/family who passed relevant articles on to them. This
seemed to be because the relentless progression of PD led them to
seek respite and explore the potential of eSCR in the hope of
finding something to help. They had often experienced a lengthy
and difficult period of uncertainty before being diagnosed, but initial
relief at having a diagnosis was often short-lived, ‘I was actually quite
relieved that it was something which wasn’t terminal. But as time
went by I would prefer to have had a tumour . . . . I would rather
have death or recovery than this constant downhill struggle, and
stem cell research may provide the answer’ (PD16m). Asked if they
had discussed media reports on eSCR with healthcare professionals,
several respondents said that they had. ‘. . . on at least two occasions
I have spoken to neurologists about things I’ve read (about SCR) and
on both occasions the claim in the press has been pretty much
squashed here, but they’re the experts’ (PD10m). Another experienced a similar dismissal, ‘I mentioned it to him (consultant) in the
passing, but he said it’s not curable as yet’ (PD14f). Nevertheless,
the experience of searching the internet could be ‘scary’ and discouraging; ‘they’ve actually tried stem cells in Parkinson’s patients before
and unfortunately they put them in the wrong part of the brain
from what I can gather which caused the movements to be far too
strong . . .’ (PD14f).
None of the DM group had attempted to find out about the potential role of eSCR (in terms of future treatment) though one said of a
family member, ‘I’ve got an aunt over in Canada and she keeps an
eye on the American side of things’ (DM09f). The comparative lack
of interest may have been because they were younger and did not perceive their quality of life to be greatly affected by diabetes at this time;
‘it’s more of an inconvenience I would say, more than anything else . . .’
(DM06f), or they may not have thought about the potential long-term
effects of their condition. Often it seemed that it was not media
reporting, but the interview situation, which made them think for
the first time about the future implications of their condition and
the possible role of eSCR in effecting a potential ‘cure’. Several
found it hard to imagine a life without DM, ‘. . . the thought of not
having to live with that any more is amazing really’ (DM02m). Thus,
the media hype surrounding eSCR may have seemed irrelevant to
the DM group at this stage of their lives.
These views contrasted markedly with those of parents who
accompanied them and frequently contributed to the interview;
‘you know I could lose (son) if he forgets to eat or inject his insulin
and that’s preventable . . . . I’d do anything for a cure for him’
(DM03m-mother) and ‘the reassurance that your child could lead a
normal life, I mean not that she’s disabled or anything, but it’s a lifetime of careful planning, with the thought of disability if you overstep
the mark . . .’ (DM14f-mother).
Having received ‘impartial’ written and verbal information about
eSCR, few among the infertile couple group had deliberately sought
additional information elsewhere; ‘it was at the patient information
thing . . . you went on about stem cells and maybe finding cures for
things like diabetes in kids and that’s great. We both talked about it
and as long as you weren’t using good embryos that could help us’
(INF01m).
There were more variations among members of the GP group.
Although most of them had seen news reports, read papers or
searched the internet very recently, some also went out of their
way to learn more about eSCR, ‘I know there’s adult and embryonic
and I know that most of the controversy is around the embryonic . . . .
I did a little bit of looking up on the computer before I came!’ (GP08f).
But most searched with caution; ‘it can really be quite dangerous the
information that’s out there and people as well as embryos are easily
manipulated’ (GP06f). Nevertheless, desperate cures sometimes led
to desperate internet searching. ‘My ex-husband wants to take (son)
to Alabama, next week it’s Russia, then it’s Korea . . .’ (GP05f).
Twelve of this group described themselves as interested in science
and research issues; ‘just working in the hospital, you kind of tend
to study bits and pieces of medicine, you kind of know what’s going
on, what’s new and things like that’ (GP08f). Significantly, five
members of the GP group had medical problems themselves or
Media influence and perceptions of stem cell research
knew of friends or relatives who might benefit from eSCR, and along
with two others, said that they hoped to become better informed as a
result of the interview. They contrast with three with strong religious
views which made them question the ethics of how eSCR is reported;
‘sadly the suspicion that I hold about this whole research process has
been confirmed. For over 20 years there has been reporting of breakthroughs with embryonic stem cell research, but to my knowledge
no-one has ever been treated with human cells’ (GP06f). It appeared
that some members of the public had very different motivations for
seeking further information about eSCR.
Knowledge and understanding of eSCR
Respondents were asked about their understanding of laboratory
and clinical processes of eSCR: sources of cells used, applications
and potential beneficiaries. The PD group on the whole, appeared
more positive about the promises of eSCR; ‘I don’t really know a
lot about it but have read that they can regenerate different parts
of the body . . . and hopefully when it does come (SC therapy) it
can replace the brain cells that are dying off, maybe replace the
dopamine’ (PD02m). Another said, ‘and the patient had done wonderfully, it (SC therapy) just seemed like a cure, and there was all
this photographs of his grandchildren and everything . . . from
having been more or less sitting in a chair’ (PD03m). But, there
was some confusion about the source of embryonic stem cells,
some believing they were derived from aborted fetuses, ‘. . . somebody with Parkinson’s told me that somebody they knew had got
stem cells off the fetus’ (PD06f) and some were uncomfortable
with this; ‘they (the media) were talking about aborted fetuses at
the time, and I have a big hang up about abortions’ (PD14f). A
few spontaneously mentioned cord blood and IVF, and when
reminded by the interviewer, most realized that they had been
aware that IVF was implicated.
As far as clinical applications were concerned, most had read that
treatment would involve injecting stem cells into an affected individual,
and few could imagine other clinical or pharmaceutical applications.
One participant credited eSCR with improving the efficacy and
safety of pharmaceutical products; ‘I do believe in proper research
for medicines and improving the calibre of life, and I believe it’s that’
(GP02m). On asking what specific conditions they thought might
benefit from eSCR, knowledge varied and for the most part, was
based on media reporting or personal circumstances. All mentioned
the same few conditions: PD, spinal cord injury and Alzheimers,
often owing to personal circumstances or having a relative affected
by the condition.
The DB group showed the least insight, with one asking the
researcher if diabetes ‘can be cured then with these stem cells?’
(DM12f). The diagnosis of insulin-dependent type 1 diabetes was
usually immediate and occurred at a much younger age; this may be
why it was often harder for those living with diabetes to realize the
full significance of their condition, ‘. . . at that time I wasn’t really thinking about the sort of longer term complications and the implications of
having a chronic illness . . .’ (DM02m). Thus, they knew little about
eSCR and seemed unaware of its relevance to them; ‘I’ve heard of
it (SCR) on the television . . . but I’ve never heard it with regard to
diabetes’ (DM12f) or dismissed media reporting of scientific breakthroughs, ‘you hear about them all the time but I don’t really pay
1109
too much attention because I always think . . . I mean they always
say the things are years and years away’ (DM08f).
Despite being given literature on eSCR and attending a lengthy
information session in order to make decisions about donating
embryos for research, those living with infertility were more interested
in their own condition and less inclined to interrogate the media for
further information. As a result, they knew little about the processes
of eSCR itself or clinical applications for eSCs. But, the infertility group
were satisfied that by donating poor grade embyros—which they
viewed as a by-product of IVF treatment—they would be doing
good; ‘. . . so if our embryos can go some way to preventing
another family from experiencing the same thing (Alzheimers), that’s
got to be worthwhile surely’ (INF04f).
Members of the GP group appeared more knowledgeable than the
patient groups; ‘I’m interested in research anyway’ (GP09f) and ‘I do
on occasion read the New Scientist . . . but also just general interest’
(GP10f). Those who opposed the science for religious or ideological
reasons described the sources of stem cells, processes involved and
applications with the greatest degree of accuracy: ‘nobody wants to
have diseases or hereditary illnesses, but I don’t think the right way
is to eliminate embryo material we don’t like, to try and advance
research into curing those diseases rather than getting rid of the
patient, and I sort of lump this embryo as a patient because it
carries the disease’ (GP15f) and ‘we would not use a human for
experimental purposes that might harm that human—we would not
use PARTS of an adult human—my belief is that life begins at fertilization of an ovum and that should apply to an embryo’ (GP22m).
Perceptions of media reporting—including
moral and ethical aspects
Most respondents volunteered an opinion on the media’s reporting of
eSCR and those who did not were shown relevant newspaper cuttings
with dramatic headlines, such as ‘Scotland at the forefront of stem cell
revolution’ and ‘UK scientists celebrate hybrid embryo research
move’. Respondents characterized the reportage as ‘hyped up’ by
which they meant, a way to stir controversy and increase circulation;
‘well there’s always sensationalist headlines. Take for instance that
woman in Italy in her 60’s who got pregnant with IVF. I mean that’s
just disgusting, but we accept that’s hype and no doubt it sells
newspapers . . .’ (INF02m).
Although most agreed the media’s role is to honestly report
scientific findings, this was not always felt to be the case; ‘we did
not find making the decision easy (donation of embryos), I mean,
who would, with all the suspicion and media speculation surrounding
stem cell research?’ (INF04m), and at times, the moral stance of the
reporter appeared to bias media reports; “well they (media) debate
at what time life begins . . . . I think if you have a cluster of cells that
aren’t capable of saying ‘don’t kill me’, then that’s not life, not until
it’s living and breathing on it’s own” (PD05f). It was felt that the
media had a role in shaping opinion on the ethics of eSCR. A
GP21m said; ‘and what’s the alternative—flush them down the
toilet?—what about the ethics of that? See that’s the thing, all these
pro-lifers get on their moral high horse about don’t destroy
embryos, don’t allow abortion, but what about freedom of choice,
unwanted pregnancies, children being brought up by drug addicts,
you read about it all the time’. However, a minority (n ¼ 3) in the
1110
GP group had strongly defined religious beliefs and appeared not to be
swayed by dramatic media headlines; ‘It (the media) has a huge influence, there’s no doubt about that, and they don’t always cover all the
aspects of a story . . . but it’s all hyped up, whatever you read . . .’
(GP06f).
Many in the PD group had come across such reports before but all
too often the ‘cure’ had not lived up to expectation, ‘In the past, the
media have claimed that there was a cure for Parkinson’s but it’s not a
cure, it’s an alleviation of the symptoms’ (PD14f). Some noted that
any improvement could be short-lived; ‘We read somewhere about
someone going abroad for stem cells and it worked initially, then 3
months later they were worse than before the treatment’ (PD04m).
Several mentioned that ‘miracle cures’ could have a negative effect
in the long-term and many expressed anger that media articles were
‘scaremongering’. Reports focusing on ‘miracle cures’ were often
seen as distracting from the real scientific issues while being inadequately or misleadingly reported; ‘They’re being misleading or it’s
not a real improvement’ (PD10m) and; ‘well, you wouldn’t know
whether to trust it or not. If it’s a suitable treatment, then it will be
offered here won’t it?’ (PD04f). Several participants had well
meaning relatives and friends who were taken in by media reports
and passed them on, ‘other people are on my behalf and are more
interested’ (PD10m). The relatives of others protected them from
such hype; ‘they just ignore it, they don’t let me read anything, you
know . . .’ (PD06f).
The DM group on the whole was cynical; ‘there’s always a slanted
view on things, whatever you read about these days—everything now
is never based on the facts’ (DM03m) and, like the PD group, recalled
being let down in the past by misleading or unethical fraudulent
reporting which ‘had damaged the whole field’ (DM11m). However,
the reporting of problems with scientific advances was seen as
equally detrimental. Speaking about a Multiple Sclerosis patient’s
experience, DM04m said, ‘I guess I’m just a little cynical but as soon
as any tiny thing goes wrong in these things everyone jumps all over
it (media story) and that’s well, just one victim talking about their
experience . . . .’ Others felt such media reports were not properly
followed up: ‘you never know with the media—there have been all
these mentions of cures in the past few years and nothing’s really
come of them, or you don’t hear about them again’ (DM03m).
Most members of the infertility group were aware of media reporting on eSCR but less negative about the ethical aspects of it, perhaps
because of its relevance to their decision about embryo donation.
When asked whether they had been influenced by the media in any
way, one man said that media reports could have an educational
value if they improved ‘the understanding you have after reading it’.
However, he acknowledged that this might vary from person to
person, ‘I might read something and have a completely different viewpoint or understanding than (wife) and I think that’s inevitable when
you’re talking about medical things because we’re not experts . . .’
(INF03m). These participants could also be sceptical; “. . . I don’t
know if ‘influenced’ is the right word, I mean we didn’t believe
everything we read . . .” (INF10f).
Most of the GP group was convinced that others might be taken in
by the hype but argued that they were not for a number of reasons.
(i) They did not have a current health problem which might benefit
from eSCR and therefore believed that they could be more objective.
‘Not everybody has the same level of understanding and it depends
Peddie et al.
how desperate you are I suppose’ (GP006f). They felt that this lack
of objectivity left sufferers vulnerable to exploitation. They also
suggested that others might be influenced by the media; ‘It depends
on the individuals and yeah, your typical average Joe would just
think that everybody was doing that’ (GP10f), ‘and a lot of it (media
reporting) is highly, well almost tabloid version. That’s maybe a bit
unkind as people probably find it meaningful to them’ (GP09f). One
participant vividly described significant media pressure in securing
(interferon) treatment for a young boy with cancer, who died nevertheless, ‘and as a result I don’t ever trust the press to make my moral
decisions’ (GP02m). (ii) GP group saw themselves as more discerning
than most of the general public whom they perceived themselves as
‘representing’ in this research project. ‘There’s a lot of hype out
there and it’s not everyone who can see that. No, I’d be very selective
in where I sourced my information’ (GP01f). Another said, ‘but most
(people) haven’t heard of them (SCs), and if they have heard of them,
they don’t know what use they are’ (GP03m). This selectivity went
further than simply avoiding articles with sensational headlines, some
even claimed to go back to sources such as; ‘academic journals and
things’ (GP09f) for the real facts, or more reliable media sources;
‘I’m old fashioned. I tend to believe the BBC and the broadsheets,
and not the tabloids’ (GP05f) and; “Yeah, well . . . um . . . I think the
BBC’s not bad, it’s not brilliant and there have been times that
they’ve reported on things that I’ve known more about than just the
mechanics of hybrid embryos and I think ‘no, they’ve not quite got
that’ so . . . a cautious trust” (GP22m). (iii) They thought they were
more intelligent than most people who would not recognize hype;
‘I’m sure it affects a lot of people, not the thinkers, I don’t think,
but the emotional people’ (GP14m). One argued that irresponsible
media reporting of the triple vaccine’s putative link with autism had
‘caused thousands of people in the world to reject that vaccine
which put their children at risk . . .’ (GP03m) but claimed not to be
taken in by media reports themselves; ‘but then I suppose it
depends on the intelligence of the people’ (GP10f) ‘and some
people can really be taken in by that’ (GP06f). One woman was an
exception in that she cut out such items and showed them to those
affected (by spinal cord injury) whom she knew well; ‘I don’t read
the paper in-depth, but I would read everything about stem cells
just because of this and because of my friend’ (GP04f).
Respondents were divided in their opinion of high-profile reporting
in the context of Christopher Reeve promoting eSCR; ‘. . . I’m sorry he
didn’t live, as he would have done so much for stem cell treatment’
(PD05f). However, another living with PD felt that a celebrity’s
public display of his symptoms was unhelpful, ‘I’m actually very
annoyed because I don’t think if you have Parkinson’s disease that
you would want to exaggerate your condition’ (PD14f). Some felt
that publicity about celebrities being affected by chronic health conditions had a positive effect on public perceptions; ‘. . . well it’s like
you see them in their role as celebrity or whatever, then they’re
affected by something dreadful that you think, well, that could
happen to me, and if it’s someone you like or admire, you’re genuinely
interested in what they have to say . . . it becomes somehow relevant
doesn’t it?’ (INF09f). One participant living with infertility said, ‘in my
opinion, celebrities are mediators between the science and the public’
(INF08f), which another respondent felt was very much needed in the
case of eSCR, ‘it’s going to need a high-hitter to give it visibility, that’s
for sure’ (GP05f).
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Media influence and perceptions of stem cell research
Discussion
Principal findings
The two potential beneficiary groups likely to benefit from eSCR in the
future differed in their knowledge and understanding of eSCR. Their
source of information, knowledge and perceptions of scientific
advances such as eSCR, and how the research might benefit them personally were shaped by extensive media reporting on the subject.
Those living with PD were older and more debilitated than those
with DM and saw themselves as well read and knowledgeable.
Although their understanding of the processes involved in and potential applications of eSCR were limited, they were better informed than
those living with DM who had heard about stem cells but showed
limited interest in their potential future benefits. In the DM group,
the interview often seemed to stimulate consideration of the issues
and implications of eSC therapy for the first time. Thus, perception
of media ‘hype’ was related to their individual life experiences and,
to a degree, their health status and how they perceived the implications of long-term complications. The infertility group was little
better informed, despite having experienced relevant discussions
during the course of their IVF treatment. Nevertheless, those with
infertility believed that donating spare embryos would benefit
society, but had sought no further information.
Most members of the GP group had personally accessed information on eSCR and were aware of the ‘potential beneficiaries’
mentioned in media reports, although the majority had limited knowledge of their origin and potential. The GP group relied more on their
personal beliefs and value systems, as well as their health status (thus
believing they could be more objective). They perceived themselves as
more discerning than others because of their objectivity, intelligence
and ‘scientific awareness’. The views of those who opposed eSCR
emanated from their strongly held religious or cultural beliefs.
Although, the media and internet were primary sources of information
for all—except for couples with infertility—members of all four groups
claimed not to be taken in by media reporting of dramatic events and
the ‘hype’ surrounding eSCR. All four groups saw themselves as sceptical about the scientific advances promised by eSCR and media
reporting of them, with the patient groups having been disappointed
by over-hyped messages in the past. Overall, the media’s reporting
of ‘miracle cures’ was seen as particularly cynical and irresponsible.
All were aware that celebrity endorsement of scientific advances
played a role in such hype, and most welcomed it.
Strengths and limitations of the study
This is one of few studies to include the views of vulnerable patient
groups which might benefit from eSCR in the future (potential recipients) as well as potential donors and members of the general public.
Its qualitative nature enabled respondents’ perceptions of the media
information available to be examined in the context of individual
lives, beliefs and experiences. Engaging with the views of such a
diverse population supports the appeal in the Medical Research
Council’s Stem Cell Initiative (2004) to strengthen public engagement
with scientific advances such as eSCR.
The study took place in a specific setting in Scotland and presents
the views of 66 selected people who were not drawn from a representative sample; thus the findings cannot be generalized to a wider
population. Those living with PD had various degrees of debility but
were articulate and may have been better educated than most PD
patients. It may be that the differences found between the PD and
DM groups—in relation to knowledge and understanding of media
reporting—were due to age differences and degree of debilitation.
Members of the general public were also a selected group in that
they responded to advertisements in public places and tended to be
favourable towards scientific research. There was a general trend in
this group to seek out extra information on the topic prior to
coming for interview and they may therefore be more knowledgeable
than other members of the general public.
Findings in relation to other studies
Like Pfeffer (2008) and Parry (2006), we found that the majority of
respondents’ awareness of sources of stem cells was limited, as was
their understanding of how stem cells could be used to cure conditions
such as diabetes and PD. A minority (n ¼ 3) opposed to eSCR stood
firm in their religious and ideological value pre-dispositions, thus,
were not influenced by media reporting on the subject (Nisbet,
2005; Critchley, 2008). There was evidence that respondents’ motivations for seeking information—whether illness experience or wishing
to answer interview questions adequately—affected their pursuit of
information, but it did not appear to ‘influence’ them. Critchley and
Turney (2004) and Critchley (2007) similarly found belief in scientific
progress and social trust to be important influences on perceptions.
However, as Nisbet (2005) and Critchley (2007, 2008) have suggested,
attitudes towards eSCR change little as a result of information received,
because of pre-existing views and value pre-dispositions. Those living
with PD clearly had vested interests in eSCR development (Jenkins
and Fallowfield, 2000) which had led them or their relatives to
become more interested, whereas those with infertility apparently
felt sufficiently informed to make a decision about donation of poor
grade embryos. The wish of respondents to gain knowledge about
the topic (Lowton, 2005; Nisbet, 2005) or to benefit the scientific community (Sackett, 2005) has been identified before, with Harris (2005)
viewing the latter as a moral duty.
Nisbet (2004) believes that the media should ‘inform’ the general
public and that increased understanding of science will lead to increased
public support (Nisbet, 2005), but inaccurate or premature reporting
risks damaging public perceptions of reputable science (Editorial,
2005; Critchley, 2008). Critchley (2007) questions whether a ‘miseducated’ or poorly informed public actually affects scientific and medical
progress, while Sherley (2008) believes that misinformation about
eSCR has left the general public in a state of ‘constant uncertainty’.
Although most participants’ information came from extensive media
reporting on the subject—also identified in other studies as ‘scary’
(Jadad et al., 2006)—they were aware of the hype surrounding
‘miracle cures’ and claimed not be influenced by such headlines.
Critchley (2008) has reported high-profile media coverage following
changes to ‘The Human Embryos Act’, and the ‘Human Cloning Act’
(2002) in Australia. Interestingly, participants in all four groups had
learned of the potential benefits of eSCR for spinal cord injury from
high-profile media coverage of the late Christopher Reeve. It is a
concern that the media’s role is both to inform the general public
about the outcome of health research and to objectively report the
1112
response generated (Nisbet, 2004; Dresser, 2005), as they may be
guided as much by preconceptions as evidence.
Our study highlights the potential vulnerability of some patient
groups who may find it difficult to critically appraise the plethora of
available information in their quest for a ‘cure’. Media reporting is
responsible for highlighting the promise of stem cell research to
some patients, whose confusion may be compounded by the scepticism shown by their doctors pending rigorous scientific evaluation.
The media has an influential role in shaping donor, patient and
public perceptions of eSCR, reinforcing Nisbet and Goidel’s (2007)
belief in the power of knowledge in support of eSCR.
Conclusion
As the pace of eSCR accelerates, patients, staff and members of
the public are faced with vast amounts of information, some of it
controversial. The media present uncritically what they see as ‘groundbreaking’ advances, but the evidence-base for treatments using eSCR
is far from secure. Despite extensive recent media coverage, participants in this study from varying backgrounds demonstrated limited
understanding of the processes involved and how it might be
applied in the clinical context. In the context of engaging society in
discussion of emerging technologies, our study shows how those in
different situations source and process media reporting and demonstrates the emotional upheaval that can result from misinformation
and/or unethical media disclosure. Despite a keenly felt need for a
‘cure’, particularly among some patient groups, all those interviewed
displayed a degree of scepticism towards media reporting of eSCR.
Members of the GP group in particular, prided themselves on their
ability to separate hope from hype.
Acknowledgements
The authors thank participants, staff at the neurology, diabetic and
assisted reproduction clinics, Aberdeen.
Funding
Parkinson’s Disease Society (PDS), Diabetes UK and NHS Grampian
Endowment Trust. M.P. was funded through the Wellcome Trust.
Appendix 1
Aide memoire
† Reasons for participation.
† Current lifestyle, health and quality of life.
† Diagnosis and development of disease/condition/infertility, if
appropriate.
† Knowledge and understanding of eSCR and perceptions of
relevance.
† Moral and ethical aspects of eSCR.
† Perceptions of the scientists working in this field.
† Perceptions of motivations for embryo donation.
† Expectations regarding future treatment/benefits.
† Sources of information re.eSCR.
† Awareness of and feelings about media representation of eSCR.
Peddie et al.
References
Ben-Hur T. Human embryonic stem cell therapy for Parkinson’s Disease.
Future Neurol 2006;1:227 – 236.
Brunstein CG, Wagner JE. Cord blood transplantation for adults. Vox Sang
2006;91:195 – 205.
Charmaz K. Constructing Grounded Theory: A Practical Guide through
Qualitative Analysis. London: Sage, 2006.
Critchley CR. Stem cell research: what do the public really think and why?
In: Stranger M (ed). Human Biotechnology and Public Trust: Trends,
Perceptions and Regulation, Occasional Paper No. 7. Hobart: Centre for
Law and Genetics, 2007.
Critchley CR. Public opinion and trust in scientists: the role of the research
context, and the perceived motivation of stem cell researchers. Public
Underst Sci 2008;17:309– 327.
Critchley CR, Turney L. Understanding Australian’s perceptions of
controversial scientific research. Aust J Emerg Technol 2004;2:82 –107.
Devolder K. Creating and sacrificing embryos for stem cells. J Med Ethics
2005;31:366 – 370.
Diabetes UK. Position Statements: Stem Cell Research and Diabetes. 2006. http://
www.diabetes.org.uk/About_us/Our_Views/Position_statements/Stem
_cell_research_and_diabetes/ (12 September 2008, date last accessed).
Dresser R. Stem cell research: the bigger picture. Perspect Biol Med 2005;
48:181 – 194.
Editorial. Too much, too soon. Nature 2005;435:538.
Fernandez CV, Gordon K, Van den, Hof M, Taweel S, Baylis F. Knowledge
and attitudes of pregnant women with regard to collection, testing
and banking of cord blood stem cells. Can Med Assoc J 2003;168:
695 – 698.
Gardner RL. Stem cells: potency, plasticity and public perception. J Anat
2002;200:277 – 282.
Giacomini M, Baylis F, Robert J. Banking on it: public policy and the
ethics of stem cell research and development. Soc Sci Med 2007;
65:1490 – 1500.
Halban PA, Kahn SE, Lernmark A, Rhodes CJ. Gene and cell-replacement
therapy in the treatment of Type I diabetes: how must high standards be
set? Diabetes 2001;50:2181 – 2191.
Hamilton P. Autoimmune stem cells. Drug Mark Dev 2003;14:8 – 12.
Harris J. Scientific research is a moral duty. J Med Ethics 2005;31:242– 248.
Hess DC, Borlongan CV. Stem cells and neurological diseases. Cell Prolif
2008;41(Suppl. 1):94 – 114.
Hug K. Motivation to donate or not donate surplus embryos for stem cell
research: literature review. Fertil Steril 2008;89:263 – 490.
Jadad AR, Enkin M, Glouberman S, Groff P, Stem A. Are virtual
communities good for our health? BMJ 2006;332:925 – 926.
Jenkins V, Fallowfield L. Reasons for accepting or declining to participate in
randomized clinical trials for cancer therapy. Br J Cancer 2000;
82:1783 – 1788.
Landry DW, Zucker HA. Embryonic death and the creation of human
embryonic stem cells. J Clin Invest 2004;114:1184 – 1186.
Lowton K. Trials and tribulations: understanding motivations for clinical
research participation amongst adults with cystic fibrosis. Soc Sci Med
2005;61:1854 – 1865.
Medical Research Council, UK Stem Cell Initiative. 2004. www.
advisorybodies.doh.gov.uk/uksci/ (12 September 2008, date last
accessed).
Nierras CR, Stallard J, Goldstein RA, Insel R. Human embryonic stem cell
research and the Juvenile Diabetes Research Foundation International—
a work in progress. Paediatr Diabetes Suppl 2004;5(Suppl. 2):
94 – 97.
Nisbet M. The controversy over stem cell research and medical cloning:
tracking the rise and fall of science in the public eye (online edition).
Media influence and perceptions of stem cell research
Am Prospect 2004. www.csicop.org/scienceandmedia/controversy/
index.html (12 September 2008, date last accessed).
Nisbet MC. The competition for worldwide views: values, information,
and public support for stem cell research. Int J Public Opin Res 2005;
17:90– 112.
Nisbet MC, Goidel RK. Understanding citizen perception of science and
controversy: bridging the ethnographic survey research divide. Public
Underst Sci 2007;16:421– 440.
Parry S. (Re)constructing embryos in stem cell research: exploring the
meaning of embryos for people involved in fertility treatments. Soc Sci
Med 2006;62:2349 – 2359.
Pfeffer N. What British women say matters to them about donating an
aborted fetus to stem cell research: a focus group study. Soc Sci Med
2008;66:2544 – 2554.
Sackett DL. Participants in research. BMJ 2005;330:1164.
1113
Shapiro AMJ, Lakey JRT, Ryan EA, Korbutt GS, Toth E, Warnock GL,
Kneteman NM, Rajotte RV. Islet transplantation in seven patients
with type 1 diabetes mellitus using a glucocorticoid-free
immunosuppressive regimen. N Engl J Med 2000;343:230– 238.
Sherley J. The importance of valid disclosures in the human embryonic
stem cell research debate. Cell Prolif 2008;41(Suppl. 1):57 – 64.
Snyder BJ, Olanow WC. Stem cell treatment for Parkinson’s disease: an
update for 2005. Curr Opin Neurol 2005;18:376 – 385.
Sturgis P, Cooper H, Fife-Schaw C. Attitudes to biotechnology: estimating
the opinions of a better-informed public. New Genet Soc 2005;
24:31– 56.
Submitted on September 15, 2008; resubmitted on December 8, 2008; accepted on
December 10, 2008