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  • Sociology of Health & Illness Vol. 27 No. 2 2005 ISSN 01419889, pp. 271292

    Blackwell Publishing Ltd/Foundation for the Sociology of Health & Illness 2005. Published by Blackwell Publishing, 9600 Garsington Road, Oxford, OX4 2DQ, UK and 350 Main Street, Malden MA 02148, USA

    Blackwell Publishing, Ltd.Oxford, UKSHILSociology of Health & Illness0141-9889 Blackwell Publishing 2005xxxx 2005272Original ArticleEngendering trust in UK BiobankAlan Petersen

    Securing our genetic health: engendering trust in UK BiobankAlan Petersen

    School of Sociology, Politics and Law, University of Plymouth

    Abstract

    The recent development of genetic databases, or biobanks, in a number of countries reflects scientists and policy makers beliefs in the future health benefits to be derived from genetics research. In Britain, however, a proposal for a genetic database, UK Biobank, has been the focus of a number of concerns. Establishing consent and legitimacy for any controversial biomedical research involving the participation of human subjects is difficult; it is however, acute for UK Biobank given the scale of the project and the criticisms levelled at it. Analysing recently published documents pertaining to UK Biobank, this article examines how consent for the project has been discursively framed and how this is reflected in its governance. It is argued that the problem of organising consent has been framed narrowly in terms of adherence to a well-established repertoire of institutional mechanisms which serves to limit debate on the substantive issues at stake. There is little evidence of reflection on the adequacy of such mechanisms for dealing with the unique challenges posed by UK Biobank, including achieving the confidence and participation of a population with diverse perspectives on genetic research. It is concluded that a restricted public discourse about UK Biobank may contribute to a decline in confidence in regulatory systems governing biotechnology and science more generally.

    Keywords:

    biobank, genetic database, trust, consent, discourse analysis

    Introduction

    According to proponents of the new genetics, genetics knowledge has thepotential to revolutionise the practices of medicine and public health. In thewake of the sequencing of the entire genetic code, in early 2003 (Radford2003: 8), there have been growing expectations about the development of a

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    post-genomic medicine and public health practice. Genetics knowledge, it isargued, will lead to the development of new diagnostic technologies anddrugs that will make medicine more predictive and personalised, whileinsight into gene-environment interactions will provide new strategies forlifestyle and risk management. In recent years, many medical and publichealth authorities have endorsed the genetics so-called revolution whilegovernments have committed public funds to exploit the opportunities thisis seen to provide through research and application, for improving the healthof the public. In the UK, evidence of the Governments commitment toexploiting genetics knowledge for the advancement of health can be seen inthe recent Genetics White Paper,

    Our Inheritance, Our Future: Realising thePotential of Genetics in the NHS

    (Department of Health 2003). This documentoutlines a vision of a range of future applications of genetic knowledge,including testing for single gene disorders, improving preventive andmonitoring services for those at risk of developing disease and developingnew drugs and novel therapies (Department of Health 2003: 1219). Thedecision, in 1999, to establish a UK population biomedical collection,comprising genetic and personal medical information, later dubbed UKBiobank, represents a significant move in the effort to realise the potential ofgenetic research. Funded jointly by the Department of Health, the MedicalResearch Council and the Wellcome Trust, this project is predicted to playa substantial role in the prevention, diagnosis and treatment of illness (seeDepartment of Health 2003: 68, The Wellcome Trust

    et al.

    2003: 6). Fromthe outset, however, the project has been the focus of a number of concernsand criticisms, including those in relation to its consultation processes, itsmethodology and access to and use of collected information.

    As with others undertaking controversial biomedical research involvingthe participation of human subjects, the partners of UK Biobank face theproblem of establishing support and legitimacy for their project. A major issueis an apparent decline of public confidence in the governance of biomedicalresearch, especially in the wake of a number of recent highly-publicised health-service scandals such as those involving Alder Hey Hospital in Liverpool,the Bristol Royal Infirmary and Dr Harold Shipman (Weldon 2004: 161).For example, a survey of attitudes of the general public towards science,undertaken by the Office of Science and Technology and the WellcomeTrust, found that while respondents saw the benefits of science and mostwere amazed by its achievements, there was a low level of confidence inregulation and the Government (2000: 33). Increasingly, questions havebeen raised about whether scientists can be trusted and whether researchshould be more tightly regulated. The difficulty of establishing support forcontroversial biomedical research can be seen as an aspect of a more generalproblem of establishing trust in expert authority in late-modern societies.Expert systems depend on trust, which is difficult to maintain in a contextof heightened risk-consciousness and reflexivity (Giddens 1991). As Taylor-Gooby argues, people are less likely than in the past to take expert authority

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    on trust, and are more inclined to challenge the claims of those who oncewould have been relied on as sources of authority because of their profes-sional status or accredited expertise (2000: 9). In recent science debates,public scepticism towards expertise or the decline of trust has been arecurring theme and is seen by some scientists as an impediment to scientificinnovation and development (see, for example, Institute of Ideas 2002). Theissue of restoring trust in science and scientists, and striking a balance betweenthe protection of the public and the facilitation of potentially valuableresearch, has recently preoccupied science groups such as the UKs RoyalSociety as well as policy makers. However, while the problem of establishingconsent and legitimacy for studies involving human subjects is general tobiomedical and genetic research, it is especially acute for UK Biobank giventhe scale of the project and the criticisms that have been levelled at it.

    Analysing a range of published documents pertaining to UK Biobank,this article examines how support for the project is discursively framed andhow this is reflected in its governance. The concept of framing draws attentionto the way in which claims-makers organise facts and claims and ignoreothers, in their efforts to shape public discourse and potentially public policy(Miller and Riechert 2000: 45, Nisbet and Lewenstein 2002: 361). By con-trolling the facts, language, and the images, claims-makers can help createthe judgemental biases that underlie public policy and establish a frameworkof expectations so that individual issues and events take on meaning aspublic issues (see Nelkin 1995: 7273). The creation of such biases is notnecessarily a result of an orchestrated effort by claims-makers to misleadpublics by misrepresenting issues, as is sometimes claimed or implied bycritics of media portrayals of science and technology. Rather, it is likely tooccur through routine, taken-for-granted practices of writing or presentationthat are based on unquestioned assumptions about publics, about what theyneed to know, and about how they are likely to read and understand issues.

    A consideration of context is crucial in the analysis of any discourse: thehistorical and politico-economic conditions shaping the production and dis-semination of texts, and the socio-cultural milieu influencing their reception.Written documents, such as those pertaining to UK Biobank, are a product ofparticular historical and social conditions, and assume meaning and are readin light of shared meanings about genetics and its history and significance.Particular images of genetics, aided by the use of specific metaphors, dominateat different periods, corresponding with broader shifts in conceptions of thebody, self, society and science. Knowledge about genetics and its applicationsis communicated via diverse popular cultural sources, such as television,movies, magazines, diverse news media, and increasingly the Internet (seeConrad 1997, 2001, Nelkin and Lindee 1995, Petersen 2001, 2002, Turney1998, van Dijck 1998). Such sources collectively contribute to the discourseon genetics and its benefits and dangers, which has the potential to influenceaudiences responses to specific initiatives. For example, panic responsesto the announcement of the cloning of Dolly the sheep in 1997, namely

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    concerns that the technology would soon be applied to the cloning of humans,were shaped by popular cultural understandings of science and belief in itspower to alter nature (Petersen 2002). Similarly, public reactions to UKBiobank and other genetic databases can be seen to mirror widely-held viewson biotechnology and the potential for its (mis)applications. Throughout itshistory, biotechnology has been influenced by beliefs about its bene