Scientific rationality, uncertainty and the governance of human genetics: an interview study with researchers at decode genetics

ABSTRACT Technology development in human genetics is fraught with uncertainty, controversy and unresolved moral issues, and industry scientists are sometimes accused of neglecting the

implications of their work. The present study was carried out to elicit industry scientists' reflections on the relationship between commercial, scientific and ethical dimensions of

present day genetics and the resources needed for robust governance of new technologies. Interviewing scientists of the company deCODE genetics in Iceland, we found that in spite of

optimism, the informants revealed ambiguity and uncertainty concerning the use of human genetic technologies for the prevention of common diseases. They concurred that uncritical marketing

of scientific success might cause exaggerated public expectations of health benefits from genetics, with the risk of backfiring and causing resistance to genetics in the population. On the

other hand, the scientists did not address dilemmas arising from the commercial nature of their own employer. Although the scientists tended to describe public fear as irrational, they

identified issues where scepticism might be well founded and explored examples where they, despite expert knowledge, held ambiguous or tentative personal views on the use of predictive

genetic technologies. The rationality of science was not seen as sufficient to ensure beneficial governance of new technologies. The reflexivity and suspension of judgement demonstrated in

the interviews exemplify productive features of moral deliberation in complex situations. Scientists should take part in dialogues concerning the governance of genetic technologies,

acknowledge any vested interests, and use their expertise to highlight, not conceal the technical and moral complexity involved. SIMILAR CONTENT BEING VIEWED BY OTHERS GENETICS EXPERIENCE

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GENETIC TEST RESULTS IN AUSTRALIAN LIFE INSURANCE Article Open access 19 April 2024 INTRODUCTION This paper presents an interview study of industry-employed scientists' reflections on

the consequences of human genetic technologies on the lives of ‘ordinary’ people, focusing on scientific, commercial and regulatory aspects and the perceived rationality of public reactions

to new technologies. Human genetics poses a challenge to society's mechanisms for regulating science and technology. Academia and industry are increasingly intertwined;1 the private

sector plays a crucial part in genetic research and technology development.2 The sentiments of the public regarding the new genetics are diverse,3, 4 ranging from fear that not enough

precaution is being taken with regard to adverse effects, or that the sacredness of human life is being insulted, to the opposite worries, that undue restrictions deprive suffering

individuals of crucial health benefits. Some are less than confident that the authorities are sufficiently protecting the interests of patients or others from the financial motives of

biotechnology companies or from ‘runaway’ science. In many countries, the political regulation of related issues such as genetic modification of organisms, reproductive technologies and stem

cell research, has been subject to widespread controversy, public reactions are at times acrimonious, and regulations imposed by governments have put considerable restraints on research.

Several European countries as well as the United States and Canada have taken steps towards participatory governance of human genetics, that is the public is invited to consultations, lay

participation is increased in advisory boards, and transparency and accountability are promoted by different measures.5, 6 The founders of the UK Biobank, which is to be the world's

largest resource for population genetic research, have committed themselves to a public governance and consultation policy.7 The goals of public engagement are a subject of controversy,

however.8 Public consultation and apparent transparency may be designed to promote genetic literacy and secure compliance with established policy, as when scientific advice is seen as

sufficient to guide policy.9 Otherwise, such processes may shift power towards the public, to the point of overruling expert opinions on science and technology policy.10 Tensions between

different perspectives on public involvement have gained importance in light of recent evidence that the relationship between scientific authority, public interests and governance is

unstable in several arenas involving biotechnology and medicine.5, 11 There is anecdotal12 and broader13 evidence that commercial interests in the biotechnology sector sometimes run counter

to the interests of the general public. Some critics argue that researchers tend to bother less about the social impact of their work as they become involved with industry.14, 15 Such claims

are not easy to substantiate, but the meltdown of traditional distinctions between academia and industry, and between basic and clinical research, suggests a cautious attitude towards the

underlying motives and self-proclaimed moral values involved in the search for knowledge.1, 16, 17 The perceptions of scientists who engage in human genetics about moral issues have not been

widely investigated. In 2003, however, a survey of more than 1200 geneticists in the United States demonstrated a tension between the highly valued rights of nonexpert individuals to decide

how to avail themselves of genetic technologies and the equally clear opinion that expert knowledge provides a privileged position when it comes to making decisions about the use of those

technologies.18 And in an interview study from 1997 senior scientists and clinicians in human genetics in the United Kingdom were found to be eager to maintain the distinction between

‘objective science’ and ‘the public sphere’, preserving their professional power as counsellors to policy-makers and educators of the public.19 The influence of commercial attachments on

expert deliberation was not addressed in the above studies. And though ethical challenges involved in commercialization have been discussed in recent literature,16, 17 the only study of

which we are aware that addresses how scientists engaged in human genetics view such challenges is a survey demonstrating in broad terms that commercialization is a cause of concern within

the human genetics community in the United States.20 In order to elicit in-depth reflections and deliberations among our informants, we chose a qualitative design, and conducted focus group

interviews with scientists working for deCODE genetics in Iceland. deCODE is a controversial research enterprise conspicuous to Icelandic society, and has attracted international interest.

The company's recent history exemplifies many aspects of the dynamics between expert knowledge, commercial interests and public expectations in the field of emerging genetic

technologies.21, 22 The company announces that it is ‘delivering on the promise of the new genetics,’ and boasts success in identifying and exploring targets for pharmaceutical interventions

and genetic tests for a range of diseases, including myocardial infarction23 stroke, asthma, osteoporosis and schizophrenia. More than 100 000 Icelanders – approximately 50% of the

country's adult population – have volunteered blood samples to deCODE (www.decode.com). MATERIALS AND METHODS Qualitative methods, while not providing material for statistical

generalizations, are appropriate for in-depth exploration of complex opinions, values and reasoning.24 Our informants comprised 13 individuals of both sexes, Icelanders and non-Icelanders,

physicians and biologists, and were recruited among scientists at deCODE on the basis of their interest in participating in interviews on the topic of genetics and society which had been

announced through individual discussions and a plenary presentation within the company. No differences between the sample of informants and the scientific staff at deCODE in general were

observed. The informants were interviewed by SH in English (the main working language of the company) in three focus group lasting 2 h; two groups of four and one consisting of five

scientists. All interviews were conducted within 1 week in October 2003, and a partial first coding and analysis was performed between the interviews. A semistructured approach was used: The

scientists were asked to identify and pursue any likely consequences that human genetic research may have in the lives of ‘ordinary people’. They were encouraged to draw upon examples from

their own professional and private experience in the discussion, and it was explained that the aim of the discussion was to explore rather than necessarily to agree on any definite views on

the topics given. In accordance with principles for focus group interviews25, 26, 27 the investigator encouraged exploration of key topics introduced by the informants themselves, such as

the complexity of genetic prediction and the potentially vested interests of research companies. Full audiotape recordings were transcribed verbatim and supplemented with written notes by

SH. All transcripts were coded for emerging themes and analysed through a reflective process.28, 29 SH provided the initial coding and both authors then challenged the suggested

classification iteratively until a final coding was achieved. In this process, the authors sought, through use of conflicting hypotheses, to take account of how their own preconceptions,

including the view that the dialogue between science and society ought to be strengthened, might influence the analysis. RESULTS CONFUSING GENETIC INFORMATION, OVERZEALOUS MARKETING OF

SCIENTIFIC PRODUCTS AND ESCALATING INEQUALITY > How are we going to approach this? I mean, you get a haplotype for a > certain disease, and it increases your risk maybe two-fold. But 

even > if you have the particular haplotype, you may not necessarily get > the disease. … People may just think ‘God, I have the haplotype > so I am going to get stroke or 

whatever.’ >  > If diagnostics appear on the market before the therapies … anxiety > may get higher before it gets less. Although strongly enthusiastic about their own work, the

scientists identified and discussed a range of concerns having to do with the impact of human genetics on society in general and prevention of common diseases by means of genetic

technologies in particular, expressing their satisfaction with this opportunity to ‘discuss how what you’re doing is going to influence others.’ The majority of these concerns were connected

by a common thread: the implications of genetic information are often hard to establish, as in the case of predictive testing which is of a probabilistic nature and will in many instances

be introduced in advance of effective treatment. There is a danger that oversimplification may entail overselling of new technologies by commercial stake holders, researchers and the media.

All this can result in confusion and disappointment about genetic technologies, as well as increasing the cost of healthcare with little or no benefit. Frustration may add to current

scepticism towards genetics among the public. In addition, the scientists recognised that there is the danger that social injustice and disparities in health will be propagated on a global

or a local scale through the introduction of technologies affordable to the well off only. DILEMMAS RESULTING FROM THE COMMERCIALIZATION OF RESEARCH On several occasions, the scientists

remarked that the field of healthcare and medical research is loaded with vested interests. Many players have a strong motivation to make profit from research, pharmaceutical products or

other technologies: > It's ‘follow the buck’. The pharmaceutical industry driving a > lot of the research and funding … if half the population were > taking this drug or that 

pill from 20 to 80 every day, of course it > is vast amounts of money. There is a danger that consumers and healthcare providers will be hoaxed into using genetic technologies on weak

indications. Along similar lines, the scientists mentioned that many people have found it alarming that deCODE, as a commercial enterprise, was given monopoly license to operate the

Icelandic Health Sector Database which was meant to contain medical information about the entire nation. At no time, however, did our informants venture doubts or reflections about potential

conflicts between the commercial goals of their own employer and the intellectual and ethical purposes advanced in public debate. Neither did they express concern that their own employment

status might sway their own reasoning. When vested interests, social injustice or related issues were discussed by the scientists themselves, the investigator invited further comments and

reflections, but on no occasion did the scientists take the opportunity to ponder in what way deCODE's research and public strategies might be influenced by financial considerations,

nor did they bring the discussion to bear on how their own intellectual or moral positions might be influenced by commercial motives on behalf of their employer. Rather, by omission, any

mentioning of financial considerations among biotechnology companies or overzealous marketing of human genetics was made as if such motives and fallacies could impact other players in the

field, but not deCODE. Similarly, when it came to their individual positions, the scientists simply described themselves as committed to the welfare of the public, sharing ‘a naive wish to

be able to contribute to a cure’, and seemed unaware that other aspirations and incentives, such as scientific success, financial gain or public acknowledgement, might influence their

worldview and judgement. RATIONAL AND IRRATIONAL FEAR OF GENETICS A certain ambiguity could be detected in the scientists' discussion of moral issues and public perceptions of genetics:

> Most technologies can either be used effectively and safely, but > they can also be abused. And I think it is the fear of abuse that > drives the negative response to genetics in

 society … have to find > ways to overcome that fear. This informant starts by highlighting that technology actually can be abused, and seems to argue that the way of overcoming public

fear is to prevent abuse of technologies. On other occasions however, this informant as well as others speak about an ‘irrational’ fear of genetics among the public, ‘a lot of heresy and

misconceptions’ and ‘basic mistrust of scientists’ which must be eliminated for the sake of efficient introduction of technology. The public was described as fearful and fascinated, rational

and irrational. The interviews thus reveal a tension between a critical stance towards an alleged fear of genetics in a stereotyped ‘public’, and the view that genetics really has the

potential to be used inappropriately, in which case public anxiety is in fact rational. SCIENCE AND THE GOVERNANCE OF GENETICS The scientists stated that society must develop the means to

ensure that genetic technologies are used in ways that are beneficial to all, that is, to avoid useless testing, to avoid misunderstanding of results, and to avoid that barriers to access

prevent the poor from benefiting from genetic technologies: > Technology needs to advance hand in hand with the maturity to use it > … the moral and spiritual advances in the society.

One group raised the point that Icelandic society is not conducting the debate necessary to prepare for the use of genetic technologies. When prompted, the scientists in this group suggested

that the responsibility for engaging the public in debate about new technologies should rest on universities, health authorities, the medical profession and the church. One scientist also

suggested that companies developing genetic technologies should fund initiatives to raise public debate. This was met by approval by the group. In addition to ‘maturity to use technology’

and ‘moral and spiritual advances’, the informants saw ‘political will’ and ‘ethical thinking’ as prerequisites for the governance of human genetics. They saw such processes and abilities as

qualitatively different from the mental processes involved in the development of technology itself. An example of this is seen in a discussion about the role of the health authorities,

universities and the church: > Even if we as scientists do not necessarily take them very seriously > when they start talking, the majority of the people would. I think > it is very

 important for them to enter this debate. CONTRADICTIONS, TENTATIVE POSITIONS AND SUSPENSION OF JUDGEMENT Issues of complexity and uncertainty were explored by our informants through

discussions of hypothetical genetic tests and the clinical epidemiology of established risk factors, including serum-cholesterol levels estimating cardiovascular risk and bone mineral

density measurement to estimate risk of osteoporosis. Several informants stated personal opinions or preferences in apparent opposition to their general lines of argument. The following

quotation is from a scientist who earlier in the same interview argued without reservation that the value of predictive testing lies in the opportunity to change one's lifestyle and to

benefit from preventive medications: > …the stroke haplotype. There is a lot of stroke in my family, and > I'm dying to know if I have that haplotype or not, but what I would >

 do with it? I would not really change my life or anything. But would > I take a [hypothetical] pill to prevent. Based on that haplotype? > No. Even when prompted directly, individual

scientists could not always state the exact reasons for personal inclinations to take a predictive test or not, or the meaning such tests would hold to them. Personal opinions were

frequently debated, exploring arguments for and against, without the scientists' clearly or finally committing themselves to the different positions submitted, as in the following

discussion about the value of a hypothetical predictive genetic test for osteoporosis: > A: You might check your bone density more often, you would take > hormones when you reach 

menopause and do things that help. >  > B: Well, you can scan your bones every other year, but does it > matter? >  > B: … then you have the increased risk of breast cancer … 

[or > other side effects] Though the discussion on this issue was rather long, no final verdict on the test in question or the preventive measures available was passed, and scientist C,

who stated that she was interested in knowing her personal results of such a test for ‘security’ reasons, was in doubt as to whether the results would lead to lifestyle changes or not.

DISCUSSION Our informants identified important challenges and problems concerning the use of human genetic technologies for health purposes, but did not express second thoughts about policy

decisions involved in their own research. They concurred that overzealous marketing may backfire and cause the public to become more sceptical of genetics, but seemed unaware that commercial

interests might influence deCODE's policy or the viewpoints of the informants themselves. They stated that the governance of human genetics relies on moral principles external to

scientific rationality itself, and when engaging with questions of how they themselves would make use of genetic technologies they demonstrated ambivalence and suspension of judgement rather

than clear-cut answers and opinions. Following some methodological comments, we will discuss possible interpretations and implications of our findings, in particular the relationship

between the rationality of science and the theoretical and practical demands of governance. Owing to practical constraints, the interviews were conducted within a short interval, providing

little time for the preliminary analysis of the data that might have revealed the need to revise the interview strategy in order to supplement or challenge the initial findings. In our

analysis, however, we have not been found indications that a revision of the interview strategy along the way would have added decisively to the validity of our results. We faced the

question of whether to confront our informants with explicit questions about the potential interference between their own employment positions and subjective perceptions, interpretations and

moral judgement concerning the use of human genetics. This would undoubtedly have unleashed interesting reflections in the groups. The multilayered interpretation of such reflections would

remain; however, strategic motives for expressing or concealing opinions could not be eliminated. We therefore chose to let the interviews develop by simply encouraging our informants to

pursue their own reflections on how genetics might impact on the lives of ordinary people. Interestingly, critical self-reflection did not arise in any of the groups. How should this be

interpreted? Our informants may have been motivated by strategic reasons to picture themselves, and by implication deCODE, as socially responsible, by paying lip service to worries and

ethical concerns about genetic technologies, while intentionally avoiding potentially discomforting reflections on their own positions. Strategic self-portrayal is not unknown in the

biotechnology world. A recent study among biotechnology entrepreneurs on the capital markets in New York city has shown that the self-portrayal of this industry is pervasively influenced by

the requirement for cash.30 Previous studies have demonstrated how deCODE promotes a favourable image of the company and its research,31, 32 a requirement for funding as well as public and

healthcare cooperation in research projects. Although public anxiety about genetics can obviously constitute an impediment to deCODE's interests, openly criticising the public for

irrational attitudes towards genetics could do more harm than good. The ambiguity encountered among our informants regarding public suspicion of genetics might therefore reflect a tension

between the opinion that public anxiety is an irrational impediment to business, and the strategic insight that this anxiety must somehow be respected even if irrational. The eagerness

demonstrated by our informants to engage in the interviews, however, as well as other behavioural aspects, including the tentativeness and uncertainty revealed in their dialogues, indicate

that the lack of critical reflection regarding their own and deCODE's positions was a genuine expression of these scientists' moral self understanding, and not a strategic stance

to protect themselves or their employer. This finding is consistent with the social psychological theory of cognitive dissonance, which describes how people suppress from consciousness

certain attributes of their acts and motives in order to maintain a consistent and positive self understanding.33 It is our impression that the informants share a genuine moral sensitivity

to challenges raised by the genetic technologies they are contributing to. This perspective may, however, also coexist with strategic motives such as the one noted above; namely that public

anxiety is an impediment to business and has to be taken seriously in order to ‘neutralize’ it. The scientists' call for societal regulation of genetic technologies resonates with the

philosophical tradition claiming that the regulation and use of science cannot be guided successfully by the principles of science itself. Already Aristotle held that theoretical reasoning

and technical knowledge involved in human well-fare should be guided by a moral-practical rationality, a faculty of judgement concerned not only with the right actions to achieve a given

end, but also the identification of valuable ends, as well as the positive and negative contribution of a given means to different ends. On the view of social philosopher Jürgen Habermas,

the rationality of an engineering science does not automatically bring benefits to mankind. For this to happen, the engineering disciplines must be managed by institutions embodying sound

moral principles and appropriate procedures for judging the pros and cons of new developments. The successful regulation of novel technologies does not follow the same rules as does science

itself, and should be judged by other standards.34, 35 Our informants identified complex and intriguing questions regarding how the means provided by human genetic technologies can

contribute to the end of improving health without causing anxiety and injustice or inappropriately increasing expenses, and their arguments further imply that these questions are in the

domain of a moral-practical rationality qualitatively different from that of scientific knowledge and technology itself. Some of the challenges of predictive testing are easily illustrated

by the case of osteoporosis, a clinical entity researched by deCODE and discussed by our informants. Despite the increased risk of fractures in osteoporotic women, most women with low bone

mineral density will not suffer fractures, and most fractures among older women do in fact occur in individuals with normal bone mineral density.36 Also, the preventive measures available to

women ‘at risk’ do not eliminate the risk of adverse outcome.37 Because of the probabilistic nature of predictive testing, the incomplete effect of prevention, side effects and economic

costs, as well as contending social and individual values, the use of bone mineral density measurement and preventive measures against osteoporosis-related fractures is not necessarily of

universal benefit for women and society. In keeping with conclusions drawn in recent litterature,6, 38, 39, 40 our informants seem to acknowledge that predictive testing and preventive

measures against osteoporosis and other common diseases based on genetic technologies will be compounded by similar complexity. Our informants conceded that genetics professionals do not

hold privileged perspectives on the value-laden questions of how genetic technologies should be used. However, as stated above we also found some evidence of the view that public opinions

may be frankly irrational, science itself providing sufficient guidance for the implementation of genetic technologies. The latter view corresponds to the results from an interview study by

Kerr, Cunningham-Burley and Amos, according to which genetics professionals in the United Kingdom tended to define their professional knowledge as exempt from social and commercial

influence.19 If this stance was less prominent in our study, this may be a consequence of the uncompromising debate conducted between 1997 and 2000 in Iceland and internationally about

deCODE's plans for the Icelandic Health Sector Database.21, 22, 41 For deCODE, the opposition and the subsequent regulation imposed by Icelandic authorities must have been an

uncomfortable reminder of how easily plans, which from the researchers' point of view may be motivated by nothing but a visionary blend of scientific logic, bravery and industriousness,

can be disrupted by unanticipated societal forces. The personal uncertainty among our informants regarding how to make use of genetic technologies illustrates that in the face of

scientific, moral and health-related uncertainty, deliberation involves exploring different perspectives and value-claims, and their conflicting relationships. In discussions of what is

morally right and appropriate, temporary suspension of judgement and investigation of complexity and ambiguity is required.42 Further, the points of view offered by our informants do not

necessarily express opinions and attitudes of which they were cognisant before the interviews. They are the products of a dialogue, where the dynamics of the interviews influence the

scientists' negotiation of meanings and stances.43 We believe that we were able to avoid fruitless ‘demonising’ of industry and take seriously the ability and willingness of our

informants to critically reflect upon their own activities,44 thereby producing new insight among themselves, which hopefully will serve as input into the broader debate about genetics,

commercialization and governance. Certain clues about rational governance of challenging technology development in genetics may be inferred from the results of the present study. What we

have demonstrated on a microscopic level – acknowledgement of complexity, tentative suspension of judgement and collective exploration of arguments and opinions – are likely to be crucial

features of any deliberative rationality able to manage the products of human genetic research. In our opinion, scientists share the responsibility for highlighting uncertainty and dilemmas,

thereby stimulating public deliberation. They also need to acknowledge that vested interests of a commercial nature may interfere with scientific and moral judgments in the pursuit and

governance of genetics. Public deliberation on the use of genetic technologies is valueless without scientific insight, but the expertise should be used to explore and explain, not conceal

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bioethic. _Nat Genet_ 2001; 28: 297–298. Download references ACKNOWLEDGEMENTS The study was supported by a grant from the Norwegian Research Council, Grant no. 147640/330, and by a mobility

scholarship from the Nordic Research Board, Grant no. 030444. We thank the scientists from deCODE genetics for their generous assistance and Kristín E Harðardóttir, and the anonymous

reviewers for their valuable comments. AUTHOR INFORMATION AUTHORS AND AFFILIATIONS * Department of Public Health and Primary Health Care, Section for general practice, University of Bergen,

Norway Stefán Hjörleifsson & Edvin Schei Authors * Stefán Hjörleifsson View author publications You can also search for this author inPubMed Google Scholar * Edvin Schei View author

publications You can also search for this author inPubMed Google Scholar CORRESPONDING AUTHOR Correspondence to Stefán Hjörleifsson. RIGHTS AND PERMISSIONS Reprints and permissions ABOUT

THIS ARTICLE CITE THIS ARTICLE Hjörleifsson, S., Schei, E. Scientific rationality, uncertainty and the governance of human genetics: an interview study with researchers at deCODE genetics.

_Eur J Hum Genet_ 14, 802–808 (2006). https://doi.org/10.1038/sj.ejhg.5201626 Download citation * Received: 04 October 2005 * Revised: 02 March 2006 * Accepted: 07 March 2006 * Published: 19

April 2006 * Issue Date: 01 July 2006 * DOI: https://doi.org/10.1038/sj.ejhg.5201626 SHARE THIS ARTICLE Anyone you share the following link with will be able to read this content: Get

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governance * ethics * genetic testing * qualitative research * industry research