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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.
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.
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.
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.
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 consensus so far is that haemopoietic stem cells are incapable of long-term 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 well-reported 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.
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).
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 = 2) or family member (n = 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 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.
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.
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 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.
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 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.
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 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).
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 = 3) in the 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 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).
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.
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.
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 = 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 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.
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 ‘ground-breaking’ 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.
Parkinson’s Disease Society (PDS), Diabetes UK and NHS Grampian Endowment Trust. M.P. was funded through the Wellcome Trust.
The authors thank participants, staff at the neurology, diabetic and assisted reproduction clinics, Aberdeen.