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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 benefits
aswell as its dangers. It is very much a product of regulatory
regimes andefforts to overcome publics anxieties about its uses and
the threats posed tosuch concepts as Nature, the natural and
motherhood (Bud 1995: 2945, 306).
Published documents pertaining to the UK Biobank proposal, most
ofwhich are accessible via the web, provide insight into a range of
issues andconcerns in relation to the storage and use of personal
genetic information.They include reports of public consultations,
outputs from governmentenquiries and of the Human Genetics
Commission, written evidencepresented by various groups to
Parliament, publications released by theprojects partners, press
releases and the draft protocol and ethics andgovernance framework
documents. A search of the Internet was undertakenat regular
intervals between August 2002 and December 2003 in order toidentify
pertinent documents, using the keyword Biobank.
Publicationsreferred to in collected documents, many of which were
also available on theweb, were then retrieved. Informal discussions
with officers at UK Biobankassisted in identifying other published
literature. Documents were thenanalysed, and note made of the
nature of the documents, stakeholders/claims-makers, key themes and
use of particular language, metaphors,rhetorical devices and the
presence or absence of supportive evidence andof responses to the
concerns of critics. The analysis revealed that the UKBiobank
project has been discursively framed in overwhelmingly
positiveterms, which has been achieved by the use of a specific
language and byreference to particular issues and facts. Documents
have emphasised theprojects future benefits for the public, its
competent management and itsadherence to good practice. Critics
substantial concerns have either beenignored or portrayed as having
been adequately addressed through dialogueand adherence to the
projects ethics and governance framework. Overall,the framing of
the problem of organising consent has occurred within a
well-established set of principles and practices, which has served
to narrow publicdebate about the substantial social and political
implications of developinglarge-scale genetic databases for
research. Before proceeding further, however,some comments on the
historical and contemporary context shaping thedevelopment of UK
Biobank and responses to the project are in order.
Context shaping the development of UK Biobank
The development of UK Biobank needs to be seen in the context of
ahistorically-specific discourse on genetics and its
potentialities. This
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discourse, which began to emerge in the 1980s and 1990s, has
focusedsubstantially on the medical and public health applications
of geneticresearch (Petersen and Bunton 2002, Condit 1999). The use
of the metaphorof the blueprint signalled a shift from the
individual gene to the genomeand an exclusive concern with the
individual and the family to encompasssocial structure and
commercial considerations (Condit 1999: 159177).Developments in
communications technologies in the last two decades haveprofoundly
shaped views on genetic information and its potential
applications.More and more, the image of the genome is of an
information system that canbe read and edited. The metaphors of the
code and the book becamepredominant, and writers began to refer to
the quest to break the geneticcode or to read the genomic book of
life. In the 1990s, the Human GenomeProject the mapping of the
human genome became a scientific andcommercial priority (Kaye 2000:
327). The fusion of two huge technosciences biotechnology and
informatics has provided new explanations of disease,and the
possibility of new DNA diagnostics, new pharmacological productsand
a new commodity bioinformation (Rose 2001a, b). Digital
technologiesare seen as having the potential to unlock the secrets
of life (Keller 1992)and to allow for novel possibilities for
storing, manipulating and transferringdata. Such technologies have
made possible the development of geneticepidemiology, a
sub-discipline devoted to the study of
gene-environmentinteractions. Stimulated by advances in molecular
biology, computertechnology and statistical modelling, genetic
epidemiology seeks to describeand explain the distribution of
genetic traits and diseases in populations andfamilies. It is a
field of research dependent on very large population-basedsample
collections and access to detailed patient information such as
thatpromised by UK Biobank (see Martin and Kaye 2000: 168).
The proposal for UK Biobank (originally UK Population
BiomedicalCollection) arose out of discussions between the Medical
Research Council(MRC) and Wellcome Trust, and the decision, in June
1999, to establish aresearch resource to collect genetic and
environmental information using aprospective population cohort
study. It was agreed to make this available toresearchers studying
the causes of diseases in later life. In 2001, the projectwas
enthusiastically endorsed by the House of Lords Select Committee
onScience and Technology (Fourth Report) which recommended that
theGovernment provide sufficient earmarked resources for the
project (Houseof Lords Select Committee on Science and Technology
2001). Funding wasannounced in April 2002, with contributions from
the MRC, WellcomeTrust (20 million each) and the Department of
Health (5 million) (Parlia-mentary Office of Science and Technology
2002: 12). The contribution ofthe Wellcome Trust and the MRC has
since been increased to 28 million(UK Biobank Briefing Note April
2004.) It was proposed that health,genetic, risk and lifestyle
information will be collected for at least 500,000participants from
the age group 4569 over a 10-year period, with recruitmentexpected
to commence in 2005. This age group has been selected so as to
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maximise the number of illnesses and deaths recorded
(Parliamentary Officeof Science and Technology 2002: 1). A document
published by the projectsfunders notes that participants will be
randomly approached via their familydoctor, after discounting
people whom it would not be appropriate to contact,and will be sent
a letter asking them to take part in the study. Further, it
notes,Not all GP practices will participate in the study the aim is
to get arepresentative sample from different areas of the country
(MRC
et al.
2003: 2).The projects participants will be followed up
periodically and informationwill be tracked against the
participants medical records, so that researcherswill be able to
study the interplay between the participants genes, lifestylesand
the diseases and conditions they may develop (MRC
et al.
2003: 3).The concept of a database that includes genetic and
personal medical
information, it should be noted, is not entirely novel. For over
30 years,registers of patients with genetic diseases have been
established in a numberof countries (WHO 2002: 113114). Current and
planned research projectsfocus on particular diseases and on
samples of varying size and use personalmedical information to
different degrees (Martin 2001: 165169, Martin andKaye 2000:
16976). However, the new generation of genetic databases, suchas UK
Biobank, differs in scope, format, and size, and in many cases
involveextremely large populations (WHO 2002: 114). A recent
international studyof eight proposed genetic databases (including
UK Biobank) found thatwhile the databases had a common goal (to
search for susceptibility genesfor complex diseases, improve health
and medical care in the region, andto stimulate the local economy
through expansion of the biotechnologysector), they differed in
certain respects, including funding, organisation,subject
participation, level of government and commercial involvement,
andpopulation makeup and size (50,000 to one million participants)
(Austin
et al.
2003: 42). Such databases, however, require as their ideal
preconditiona universal healthcare system, general in the old
welfare states, which havethe required universal healthcare records
(Rose 2001a: 123).
The role of the commercial sector, and ownership and access to
data
As Martin (2001) notes, a feature of clinically-based human
genetics researchto date has been a strong interdependence between
the private and publicsectors. The former relies on the latter (in
the UK, the NHS) to get accessto biological samples and human
subjects, while the latter rely on the formerfor the commercial
exploitation of publicly-funded research. Close academic-industry
links have been a feature of a number of large-scale
geneticdatabases to date;
e.g.
Iceland (deCODE), France (Genset), Sweden (Uman-Genomics) and
the USA (Genomics Collaborative) (Austin
et al.
2003: 3942; Martin 2001: 170). In the UK, funders of research
are generally keen onthe commercial exploitation of publicly-funded
research and on makingresearch resources, such as large sample
collections and genetic databases,readily accessible to industry
(Martin 2001: 169). Although, in August 2004,the framework
governing intellectual property and access was in the process
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of development, the draft UK Biobank Ethics and Governance
Frameworkmakes clear that ownership of the database and the sample
collection willremain with UK Biobank Limited (UK Biobank was
established as acompany in December 2003.) As the Framework
document states, Suchownership conveys certain rights, such as the
right to take legal actionagainst unauthorised use or abuse of the
database and samples, and the rightto sell or destroy the samples.
Further, it notes, Participants will not haveproperty rights in the
samples. However, UK Biobank does not intendto exercise all of
these rights; for example, it will not sell samples (TheWellcome
Trust
et al.
2003: 18). UK Biobank proposes to charge all usersan access fee,
calculated on a sliding scale, so that total costs are
propor-tionate to level of use (personal communication, Professor
John Newton,Chief Executive, UK Biobank 26 February 2004). While,
during the earlystages of the project, the commercial sector had
shown little apparent inter-est in the project, this may change as
the project progresses. The BioindustryAssociation, which is the
trade association for innovative enterprises in theUKs biosciences
sector, announced its support for the project, in a PositionPaper
on UK Biobank, published in May 2003. It commented that, Amajor
potential benefit of Biobank is the development of new
medicines,diagnostics and treatments that could benefit the publics
health. Theinvolvement of pharmaceutical and biotechnology
companies is thereforeessential in order to maximize potential
health benefits from Biobank (TheBioindustry Association 2003:
4).
While academic-industry links may facilitate technology transfer
acrosssectors, they can also generate anxieties about academic
conflicts of interestand commercial monopoly (Martin and Kaye 2000:
169). The IcelandicHealth Sector Database, for instance, has been
the subject of considerablecontroversy, related in part to its
market-driven approach, as well as to thepresumed consent of the
population (Rose 2001a, b). As Rose notes, globalplayers such as
SmithKline Beecham (now GlaxoSmithKline), and leadingfigures in UK
science, have had the advantage of seeing problems generatedby the
approach of the Icelandic case. This has led them to recognise
theneed for new hybrid structures between the state and the market
and to workslowly and consensually to get the support of all
constituencies (Rose 2001b:67). They have supported the development
of appropriate ethical andregulatory protocols and called for
greater public understanding of patentingissues in relation to
genetic information. In its written evidence to the Houseof Lords
enquiry, Human Genetic Databases: Challenges and Opportu-nities,
submitted in 2000, SmithKline Beecham argued that concernsexpressed
about industry involvement in genetic database initiatives can
beassuaged by incorporating the best practice developed by
companies suchas SB. In SmithKline Beechams view, this could be
achieved by protectionof patient privacy and confidentiality and
using an opt-in approach toparticipation based on informed consent.
It also saw a need to correct [sic]the widespread misunderstanding
that raw gene sequence information can
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be patented and that the patent holder in some way owns that
sequence asit exists in individuals (House of Lords Select
Committee on Science andTechnology 2000: 2, 7).
UK Biobank has been developed in a context of significant
culturalresistance to the commodification of the body and its parts
associated withbiotechnology and fears about its implications
(Boyes 1999, Hansen 1999,Nelkin and Andrews 1998, Plsson and
Har
d
ardttir 2002, Whitt 1998).Opinion polls suggest widespread
suspicion about the use of human subjectsfor DNA research along
with worries about ethics and privacy (Everett2003: 2). The ability
of genetic databases to store data over the longer term,and to link
genetic information with health information, and potentially
withother data such as police and employment records, is of
particular concernto a number of groups. During the planning of UK
Biobank, individualsand researchers felt that some people may be
deterred from participation ingenetics research if police are able
to compare DNA recovered from crimescenes with donor samples
(Department of Health 2003: 689). UK Biobankhas received some
critical media attention in relation to these and other issues.For
example, an article, Fury at plan to sell off DNA secrets, appeared
onthe front page of
The Observer
in September 2001 (
i.e.
some months before theannouncement of the funding of UK
Biobank). The article noted that, Thegenetic secrets of millions of
Britains could be sold off to private drug com-panies under highly
controversial proposals outlined in leaked governmentdocuments. It
referred to campaigners concerns that such information
couldpotentially be leaked to the police, employers or insurance
companies, andwould be a step to privatising the nations DNA
(Barnett and Hinsliff 2001: 1).
In 2002, GeneWatch UK, a not-for-profit public interest group
devotedto the ethical and safe use of genetic technologies,
questioned whether theproject is a good use of public money and
argued that it could underminepublic trust in medical research
(GeneWatch UK 2002). It drew attentionto scientific objections with
the project, the absence of assessment of alter-native
population-based measures, the potential for discrimination and
lossof privacy and the need for legal safeguards before volunteers
were asked todonate their samples to UK Biobank (GeneWatch UK 2002:
23). Scientiststhemselves have had divided views on aspects of UK
Biobank. While somehave been broadly supportive of the project and
believe that it is scientificallyvalid, others have seen it as
politically conceived, as costly, and as inefficientfor the
investigation of many of the diseases that are likely to be of
greatestinterest (Barbour 2003: 1737). Criticisms have been made
about the researchdesign, the process of awarding contracts for the
participating scientificgroups who will collect the data (the
project will involve a central hub inManchester and six regional
spokes), and an apparent unwillingness toaddress criticisms of the
project which has created a great deal of uneaseamong scientists,
even those who support it (Barbour 2003: 1738). And, inMarch 2003,
the House of Commons Select Committee on Science andTechnology
strongly criticised the project on a number of grounds, and
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suggested that a scientific case for Biobank has been put
together by thefunders to support a politically driven project
(2003: 4).
Investing in the publics health
It is against this background of concerns about the project that
proponentsof UK Biobank have endeavoured to highlight the projects
potential benefitsand its inclusive and ethical nature, making use
of particular language andmetaphors. Published documents describe
the project as an investment, aresource, and a national asset,
exploiting the insights derived from theHuman Genome Project, for
potential significant economic and public healthoutcomes in the
future. In its submission to the House of Lords Select Com-mittee
on Science and Technologys enquiry on human genetic databases,
theSanger Centre (which contributed to the sequencing of the human
genome)emphasised the projects potential economic benefits. It drew
attention toinitiatives in the USA and to the serious economic and
political risk inallowing one country to take sole charge of such
an important resource(House of Lords Select Committee on Science
and Technology 2000). In itsFourth Report, the House of Lords
Select Committee on Science andTechnology used a similar economic
argument (it is vital for scientific,medical and economic reasons
to maintain this competitive advantage) injustifying its support
for research involving human genetic databases (2001:4.31). The
Protocol for the UK Biobank
notes that Biobank represents asubstantial, broad and
accessible
investment
in post-genome research andthat the project will serve to
develop national expertise and infrastructure ingenetic and
molecular epidemiology (The Wellcome Trust and MRC 2002:30,
emphasis added). The Human Genetics Commission (HGC) argues
thatlarge-scale population genetic databases, established with and
supported bypublic funding, constitute a
national asset
(HGC 2002: 24; emphasis added).The use of bank in UK Biobank,
indeed, suggests that the collected in-formation will prove to be
an investment or asset, benefiting individualinvestors and the
community as a whole.
Above all, UK Biobank is promoted as a significant
resource
for research.The Background Document for the UK Biobank Ethics
and GovernanceFramework describes UK Biobank as an ambitious
project to build a largemulti-purpose data resource (Interim
Advisory Group, 2003: 3). The draftFramework itself notes that the
UK Biobank aims to build a majorresource to support a diverse range
of research that will in turn improve theprevention, diagnosis, and
treatment of illness and the promotion of healththroughout society
(The Wellcome Trust
et al.
2003: 6). In its writtensubmission to the House of Lords Science
and Technologys enquiry intohuman genetic databases, the Wellcome
Trust describes UK Biobank as anexperiment in how genome
information may be exploited with broaderimplications for future
health care. It says that the project is a model
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experimental approach to the future enhancement of links between
genomicinformation and patient care, including the introduction of
pharmacogenomicapproaches to treatment and therapy and could be a
testing ground forfuture NHS database developments (House of Lords
Select Committee onScience and Technology, 2000).
The projects partners have been at pains to underline the
projectsscientific significance, its uniqueness and timeliness, and
its potentially usefulmedical and public health applications, using
language that underlines itsmomentous impact:
As the
largest and most comprehensive prospective study
with biological samples in the world, the UK Biobank is
expected to contribute substantially to international
knowledge
regarding the combined effects of genotype and exposure on the
risk of disease . . .
. . .
A unique and timely opportunity therefore exists
for the setting up of a large study incorporating information on
genetic factors and an individuals health and exposure history.
Due to the unique combination of a large population and a
centralised National Health Service, the United Kingdom is in an
ideal position to conduct such a study
. . .
. . . Improved means of preventing, screening for and treating
these conditions arising from the UK Biobank
will have far reaching implications for the health of the public
and the health of individuals
. . . (The Wellcome Trust & MRC 2002: 6, 8; emphases
added).
It will take a number of years to build a strong foundation for
the project but the study
will provide valuable information
on the factors contributing to diseases affecting the middle
aged and elderly . . . The databases of lifestyle and health
information
will also be very useful for public health research
.
. . . Picking apart this complexity requires a study to be on a
huge scale. In time it will help us understand . . . This
understanding will
help in designing new preventive interventions
and knowing who would
benefit the most
. It may also
help in the design of a new generation of drugs
to counter most major diseases (MRC
et al.
2003; emphases added).
The Chief Executive of UK Biobank, Professor John Newton, has
alsoemphasised the projects significance as a research resource and
a contributorto the public health endeavour, in a press release
statement on the geneticsWhite Paper,
Our Inheritance, Our Future
:
. . . The UK Biobank will be among
the first and certainly the largest post-genome resource
to study the roles of both nature and nurture in health and
disease. As a population study, it will be used by the research
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community to generate the practical intelligence required for
21
st
century public health strategies. Responsibly run projects like
the UK Biobank are essential if we are to make the best use of the
human genome information. They will
help ensure that the opportunities for public health provided by
these new developments are not squandered
(Press release, The Wellcome Trust June 2003, emphases
added).
As these excerpts show, strong assurances are offered about the
potentialscientific value and public health benefits of the
project. However, readersare provided with few details about the
nature of these benefits and noevidence of beneficial outcomes from
similar smaller genetic databasesdeveloped in the past. There is no
acknowledgement of the complexities ofthe genetic basis of common
diseases that some writers believe will makeaccurate prediction
difficult if not impossible (Holtzman and Marteau 2000).Further,
there is no mention of the potential difficulties of
disentanglinggenetic and lifestyle contributions and of how
environmental determinantswill be assessed. Potential problems with
undertaking research on a samplecombining lifestyle information,
which is qualitative and context dependent,with the hard data of
DNA was raised in Parliament in 2002. It was notedthat there is a
danger of relying on research participants patchy recollectionsof
past behaviour and exposure to environmental risks that will make
itdifficult to disentangle genetic and environmental factors, which
haveimportant implications for the findings of Biobank. The fear
expressed wasthat it will skew towards over-emphasising the genetic
influence on diseaseprocesses because it is the only thing on which
Biobank will provide harddata (Gibson, Hansard 3 July 2002).
Despite the expression of such concerns,the science informing the
project remains unquestioned, and potential social,ethical and
legal problems associated with the long-term storage of
personalgenetic information receive no mention. Here, as elsewhere,
the public isassured that UK Biobank is acting for the common good
and that anybenefits will be shared and income invested. The first
public draft of theUK Biobank Ethics and Governance Framework, for
example, notes, undera heading Benefit sharing, that the
biotechnology and pharmaceuticalindustries can play an important
role in realising health benefits in a practicalsense, by
developing and improving the use of biomedical products.
Further,Any income that UK Biobank secures from access fees or
intellectual pro-perty will be invested in the resource (The
Wellcome Trust
et al.
2003: 278).
Consulting the public
The UK Biobank partners have endeavoured to demonstrate the
seriousnesswith which they have considered the views of the public
on the project.Consequently, they have undertaken a number of
consultations. This hasinvolved a combination of methods. First,
one-to-one in-depth interviews
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with the general public from across Great Britain as well as
more specificgroups (
e.g.
people with disabilities or diseases, religious and
communityleaders) was undertaken in 2000, as well as a survey of
GPs and practicenurses about their role in the project. Group
discussions (each with about 20people) with people from the
relevant age group (4569) from Hertfordshire,the West Midlands and
Glasgow were then conducted in 2002 to explorethe ethical and
management issues. A summary of the findings of theconsultations
was posted on the web, and an assurance was offered
thatconsultation is an on-going process: The findings represent
the beginning ofan in-depth consultation with the public and
professional groups
, which willhelp to inform the development of the UK Population
Biomedical Collection(The Wellcome Trust and MRC 2000: 2, emphases
added).
These consultations revealed some unease about genetics research
ingeneral: as a scientific activity it seemed mysterious and
sinister. More specif-ically, it was linked to cloning, genetically
modified foods, and designerbabies (The Wellcome Trust and MRC
2000: 3). Although, according to onereport, people were found to be
favourably disposed to the idea of researchper se, views of genetic
research were varied. While some felt that it hadpotential
benefits, others expressed reservations, some more serious
thanothers. The report noted that, Concerns were greatest in the
context ofresearch on certain genetic therapies and on
disabilities, particularly wherethese are identified before birth
(2000: 3). People were found to have mixedviews about the Wellcome
Trust and MRC proposal. A range of specificissues of concern were
raised, including possible misuse of samples forcloning or other
questionable purposes, potential discrimination against dis-abled
people, loss of participants anonymity, profiteering by
pharmaceuticaland biotechnology companies, and employers and
insurers gaining access toinformation and misusing it. The report
noted that some special interestgroups also questioned the
involvement of the MRC and the WellcomeTrust in the project,
believing that both organizations were subject to pressurefrom
pharmaceutical companies and the Government, and too willing towork
to an agenda against the interests of people with disabilities
(2000: 4).However, These worries were often allayed by explanation
of why informa-tion would be helpful to researchers, and by
reassurances of safeguardsagainst unauthorized access (2000:
45).
Consultations undertaken by People Science and Policy Ltd (2002)
forthe MRC and the Wellcome Trust revealed particular concerns
aboutcommercial involvement in the project. The consultants report
noted thatpeople were worried that companies would focus on
profitable diseasesrather than major healthcare issues and wondered
whether it would person-ally benefit them (2002: 3). As in the
other, earlier consultation exercise, thesceptical participants are
offered reassurances:
There were questions about whether companies could sell the data
on. However, participants thought that it would not be in the
interests of the
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Wellcome Trust and MRC to let this happen. The project team
assured participants that terms and conditions could be put on the
use of the data to prevent this (People Science and Policy Ltd,
2002: 21).
A range of consultative methods, including interviews, surveys
and focusgroups, have been used extensively in recent years by
various authorities andgroups including the Wellcome Trust to
ascertain public views on scienceand other issues (see, for
example, Bailey 2001, Coote and Lenaghan 1997,Joss and Durant
1995). By being seen to consult the public through theabove means
and then making findings accessible (for example, on the web)and,
where necessary, offering assurances and explanations, the UK
Biobankpartners have been able to present themselves as acting
openly and demo-cratically and taking cognisance of public
concerns. The adequacy of thisprocess and the assumptions that
underlie it are never scrutinised. There isno acknowledgement of
the limitations of such consultative mechanisms,including problems
with their assessment, and questions about whether theparticipant
groups are representative of the populations from which they
aredrawn (Petersen and Bunton 2002: 18890). Despite discovering a
numberof specific worries about UK Biobank during its
consultations, theprojects partners do not always explain how these
will be taken into accountin the subsequent development of the
initiative. Significantly, the Houseof Commons Select Committee
recently questioned the adequacy of UKBiobanks public consultation
processes. It commented:
It is our impression that the MRCs consultation for Biobank has
been a bolt-on activity to secure widespread support for the
project rather than a genuine attempt to build a consensus on the
projects aims and methods. In a project of such sensitivity and
importance consultation must be at the heart of the process not at
the periphery (House of Commons Select Committee on Science and
Technology 2003: 7).
Use of the language of citizenship
In their arguments for UK Biobank, proponents have made
extensive useof the language of citizenship, particularly in
references to participantscontribution to helping others and to
altruism. The first public draft Ethicsand Governance Framework
(EGF) for UK Biobank, released for commentin September, 2003 noted
that, Participation will be cast as
an opportunity tocontribute information that in the long term
may help enhance other peopleshealth
(The Wellcome Trust
et al.
2003: 9, emphasis added). In the publishedminutes of a
consultation with UK industry (UK Biobank: Consultationwith
Industry Workshop), the potential benefits for others in the future
areagain emphasised: The UK Biobank is a long term endeavour
and
thealtruistic contribution of participants will benefit future
generations
. In the
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same paragraph, it is noted that, The contribution of
participants to theproject should be seen as a
gift to biomedical science in the public interest
(Minutes of consultation with industry workshop 4 April 2003: 4,
emphasesadded). These references to research participants
altruistic contribution tothe health of future generations mirror
those found in other recent publica-tions on genetic research.
For example, the Human Genetics Commission report,
Inside Information
,notes, in a section, General principles for the way we treat
personal geneticinformation:
Genetic knowledge may bring people into a special relationship
with oneanother . . . Sharing our genetic information can give rise
to opportunitiesto help others and for other people to help us and
we have a commoninterest in the benefits that medically-based
genetic research may bring.We have, therefore, set out a concept
of
genetic solidarity and altruism
.This supports the idea that, for example, although nobody
should feelpushed into taking part in genetic research, when they
make this decisionpeople should be aware that by taking part they
might help those sufferingfrom disease (HGC 2002: 7, emphases in
original).
Words and phrases such as altruistic, gift, sharing,
opportunities tohelp others, common interest, help those suffering
from disease and so on,have strong resonance in liberal
democracies, especially with a broadeningof the concept of social
citizenship and an emphasis on citizen duties(Petersen and Lupton
1996: 13). Use of the term genetic solidarity, used atvarious
points in the
Inside Information
report, however, would seem tosignify a substantial modification
of the concept of
social
solidarity formu-lated during the development of the welfare
state. The term solidarity in itsconventional usage implies
cohesion, the sharing of aims and interests, andsingle-minded unity
of purpose (Marshall 1994: 503). The use of geneticmay seem odd
when used in conjunction with solidarity, but is consistentwith
what Miringoff (1991) has identified as the increasingly
prominentworldview of genetic welfare, whereby genetic
considerations tend toprevail over social ones and there is a
change in our perceptions of rights,responsibilities and duties. It
is the language of an emergent biologicalcitizenship, involving the
linking of biology and identity (Petryna 2002: 14).
The concept of genetic solidarity and altruism emphasises the
mutualityof interest in promot[ing] the
common
good: This sharing of our geneticconstitution not only gives
rise to opportunities to help others but it alsohighlights our
common interest in the fruits of medically-based geneticresearch
(HGC 2002: 16). The above reference to the gift to
biomedicalscience in the public interest, suggests, following
Titmusss (1970) classicformulation of blood donation in the British
welfare state, a transactionwhich stands outside economic
calculation and which carries no explicitright, expectation or
moral enforcement of a return gift (citing Frow 1997:
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105). However, interestingly, this position conflicts with a
view expressedearlier by the Human Genetics Commissions report,
Whose Hands onYour Genes?
, that raised the question of whether the donor of a samplegiven
purely for research purposes makes a gift of the sample
(eitherunconditional or with conditions specifying what it might be
used for)(2000: 24). An unconditional gift, it explained, entitles
the recipient to dowhat he or she wishes to do with it, in the same
way as the recipient of anordinary gift may use the gift as he
wishes. However, it noted that, Thisview conflicts with current
moral opinion, the clear direction of which is torecognise that the
donor has a moral interest in what is done with bodilysamples (HGC
2000: 24).
Informed consent and rights
Evidently recognising that participants in UK Biobank have a
moral as wellas a personal health interest at stake, the Group that
prepared the firstpublic draft UK Ethics and Governance Framework
have been at painsto spell out participants rights in relation to
informed consent and tosharing the benefits of the information that
has been donated. The draftFramework emphasises that the consent of
participants will be based on anexplanation and understanding of
the purpose of UK Biobank and thevarious policies and practices
governing its activities (The Wellcome Trust
et al.
2003: 910). The Background document to the Framework,
however,acknowledges the difficulties of conditional consent;
i.e.
consent that letsparticipants choose variously to allow use of
some data about themselvesbut not other data, or by certain kinds
of researchers but not others, or forcertain purposes but not
others (Interim Advisory Group 2003: 7). Itnotes that, Given the
large organisational and long time scales of the UKBiobank project,
and the involvement of diverse participants around theland,
contacted via many different channels, and data potentially being
usedin hundreds of research projects, participation will have to be
all or nothing
i.e.
participants will have to be either
in
or
not in
UK Biobank (2003: 7,emphases in original). Further, in relation
to participants access to data onmedical records, it is argued that
the project must proceed and be presentedemphatically as being a
research endeavour, not a healthcare endeavour.Nevertheless, it
notes, It would seem that a few pieces of information
almostunavoidably must be given to volunteers. An example is when
bloodpressure is taken during the enrolment meeting where, it would
be odd,perhaps even offensive, to take the readings but not tell
the person wearingthe blood-pressure cuff what they are (Interim
Advisory Group 2003: 8).
Clearly, the co-ordinators of UK Biobank have been presented
with an arrayof novel ethical and regulatory challenges in the
development of this project,related to its large participant group,
long time-span, and the need adequatelyto address concerns about
the use and security of collected information.
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Consequently, the first public draft Ethical and Governance
Frameworkincludes considerable discussion about such issues as
selection and consentprocedures, provision of health information to
participants, participantsrights, confidentiality, stewardship of
data and samples, research access todata and samples, management
and accountability, external governance andbenefit sharing. It also
proposes a strategy for handling contingencies inthe event that UK
Biobank has to close or make other substantial transitionsin the
holdings or control of the resource (The Wellcome Trust
et al.
2003).Because it has a number of unique features, UK Biobank has
been forcedto chart new terrain in the governance of genetics a
point stressed byProfessor John Newton, Chief Executive of UK
Biobank, at the launch ofthe Framework; namely, that it will set a
new standard for ethics andgovernance in this area (MRC 2003).
Assurances are offered that consent will be freely given and
fully informedand that information will be secured and only used
for research that is likelyto improve health. In particular,
proponents have emphasised differencesbetween UK Biobank and the
Icelandic Health Sector Database, which, asnoted, has been the
source of controversy, in consent procedures and in viewson
ownership and use of material. For example, The Wellcome Trust, in
itswritten evidence to the House of Lords Select Committee enquiry
on geneticdatabases, acknowledged negative public responses to
Icelands approach tothe storage and use of patient records;
i.e.
automatic opt-in. It noted that thishad led to some public
antagonism and subsequent international responseto the project
especially in terms of links to commercial exploitation.
Aparticular strength of the UK project, it argued, was an opt-in
voluntaryapproach; however, feedback and communication will be
necessary to main-tain the patient volunteers commitment and
contact with the organisation inthe long-term (House of Lords
Select Committee on Science and Technology2000). In the first
public draft Ethics and Governance Framework, it is notedthat UK
Biobank will develop an overall policy and detailed terms of
refer-ence, addressing fairness and transparency of
decision-making, the handlingof conflicts of interest and the
prioritisation of use of samples. UK Biobankis described as a
steward of the resource whose purpose is to generate anddisseminate
new knowledge to benefit the health of the public in the UK
andelsewhere (The Wellcome Trust
et al.
2003: 18, 27). In short, proponentshave emphasised the open and
democratic nature of the project voluntaryparticipation, feedback
and communication and its commitment to thepublic good. There is an
evident attempt to distance the project from theIcelandic Health
Sector Database that was the focus of much critical atten-tion and
to help dispel any concerns that people might have about
coercion,commercial profiteering and the improper use of
information.
Trust us
In brief, the message conveyed by the published literature on UK
Biobankis that the project is ethically sensitive, competently
managed and oriented
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Engendering trust in UK Biobank 287
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to the broader public interest; that is, worthy of our trust.
Pronouncementsof adherence to ethical procedures appear repeatedly
in published documentsrelating to UK Biobank, offering reassurance
to potentially anxious publics.Singly and in combination, these
pronouncements lend the impression thatethical issues have been
carefully considered in relation to issues of
consent,confidentiality, security of data and feedback of
information to participants.The website for the UK Biobank,
A Study of Genes, Environment and Health:Frequently Asked
Questions
, offers further reassurances in this regard. Itprovides 18
questions and answers covering the programme, including whatis
required of participants and the use of and access to information.
Thequestion-answer format, with carefully crafted responses,
assists in dispellingany doubt that people may have about the
assurances that are offered. Forexample, in response to the
question, Who will own the information andwho will be able to use
it?, it notes:
UK Biobank will be the legal owner of the database and the
sample collection. Participants will not have property rights in
the samples and this will be explained at the outset before they
consent to participate. In practice, UK Biobank will serve as the
steward of the resource, maintaining and building it for the public
good in accordance with its purpose. UK Biobank will not proscribe
any research uses at the outset. However, it will insist that all
research to be undertaken using the resource be subjected to peer
review of their scientific quality, ethical review by an NHS
Multi-Centre Research Ethics Committee, and review by UK Biobank to
ensure they are consistent with the participants consent, UK
Biobanks purpose and an Ethics and Governance Framework. UK Biobank
will maintain active communication with participants and the wider
public and will strive to build a relationship of trust in order to
foster acceptance of the ways in which the resource is developed
and used (http://www.ukbiobank.ac.uk/FAQs.htm).
In this response and the other responses, the assumption is that
we, thepublic, can trust the projects co-ordinators to do the right
thing by usand that the assurances offered about the benefit and
safety of the projectcan be believed. The question of whether the
frequently asked questionsare indeed the ones that people would
wish to ask, and whether theresponses are satisfactory remains to
be seen.
Conclusion
Scientists and policy makers face a major challenge in
establishing consentand legitimacy for controversial biomedical
research involving the participa-tion of human subjects. As noted,
this problem is acute for UK Biobankgiven its scale and the various
criticisms made of the project. In light of this,
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the projects proponents have endeavoured to frame the project in
positiveterms. First, a range of documents pertaining to UK Biobank
emphasise theprojects scientific significance, its value as a
resource, and its future publichealth benefits, thus conveying the
message that the project is deserving ofsupport. Second, the
project is portrayed as being inclusive and as sensitiveto the
concerns and welfare of the public. The problem of
organisingconsent, however, has been framed narrowly in terms of
adherence to a well-established repertoire of institutional
mechanisms, such as consultationsand the use of advisory groups.
There is little evidence of reflection on theadequacy of such
mechanisms for dealing with the unique challenges ingaining consent
and legitimacy for UK Biobank, given its scale and thevarious
criticisms and concerns raised. There is no acknowledgement of
theexistence of multiple publics and diverse and often conflicting
perspectiveson, and interests in relation to, new genetic
technologies and their applica-tions, and of the different ways in
which public opinion about genetics maybe gauged (see Condit
2001).
The regulatory response to UK Biobank, and to other
controversialbiotechnology research undertaken in Britain in recent
years, has beensubstantially shaped by the 1999 controversy
surrounding GM crops. Thiscaught policy makers unaware and led to
an overhaul of the frameworks ofgovernance for biotechnology. An
advisory and regulatory framework hasbeen developed, with an
emphasis on transparency, and dialogue betweenregulators, policy
makers, industry, interest groups and consumers (Weldon2004: 171).
For instance, the Human Genetics Commission, the UK Gov-ernments
advisory body on human genetics (including genetic databases),was
created in part for the purpose of consulting and engaging in
debatewith citizens about the future of biotechnology in Britain
(Weldon 2004:171). As in the US, the emergence of commissions as
decision-makers andan emphasis on a principle-based system of
ethics has served to thinpublic debate (Evans 2002). Substantive
(thick) debates about the ultimateends of human genetic research
are obscured by a focus on formal rational(and universalist)
arguments about the most efficacious means of
achievingpredetermined or assumed ends such as autonomy (Evans
2002: 13). Thequestion of how to best ensure informed consent, for
example, has beenposited as a fundamental issue confronting UK
Biobank, despite recogniseddifficulties of applying principles of
consent, which were developed in themedical context, to population
collections (see, for example, Chadwick andBerg 2001, Kaye 2004,
Weldon 2004).
UK Biobank offers important insights into how scientists and
policymakers may seek to engender trust in biotechnology research
which iscontentious and which raises novel problems for governance.
To date, thereis no agreement internationally on the regulation of
genetic databases orpractical advice on how to manage them (Callan
and Gillespie 2004: 4). Inthis context, it is important to
understand how proponents of such collec-tions may seek to
establish legitimacy for projects and how projects are
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governed to reflect this. If expert systems of knowledge depend
on trust,which in late modern societies is liable to be withdrawn,
as Giddens (1991)argues, then it is important for sociologists to
understand how authoritiesseek to establish trust and the likely
implications for future biotechnologyresearch of a decline in
trust. As noted, genetic research databases are notnew in the UK.
However, large-scale population collections such as UKBiobank are
novel in their scale, organisation and long time span whichpresents
many uncertainties and risks and challenges for their governance.A
restricted public discourse about UK Biobank, both its potential
benefitsand its dangers and limitations in solving major health
problems may notonly adversely affect public responses to this
project but also contribute to adecline of public confidence in the
regulatory systems governing biotechnol-ogy and science more
generally. In short, the question of how UK Biobankengages diverse
publics, and how it is seen to address the particular concernsand
criticisms that are raised, may determine whether people in the
futurewill feel confident in entrusting authorities to secure their
genetic health.
Address for correspondence: Alan Petersen, School of Sociology,
Politics andLaw, Faculty of Social Science and Business, University
of Plymouth, PL4 8AAe-mail: [email protected]
Acknowledgements
I wish to thank Shirlene Badger for our early discussions about
this article and forsuggesting a number of references. I thank
Professor John Newton and Dr ShaunGriffin, from UK Biobank, for
offering some useful items of information on theProject. Finally, I
am grateful to the referees for their encouraging comments
andvaluable guidance for revision.
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