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

271292
Alan
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Engendering
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Blackwell
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Sociology
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Blackwell
2005
UK
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2005

Securing our genetic health: engendering trust

in UK Biobank
Alan 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 the
potential to revolutionise the practices of medicine and public health. In the
wake of the sequencing of the entire genetic code, in early 2003 (Radford
2003: 8), there have been growing expectations about the development of a
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Alan Petersen

post-genomic medicine and public health practice. Genetics knowledge, it is

argued, will lead to the development of new diagnostic technologies and
drugs that will make medicine more predictive and personalised, while
insight into gene-environment interactions will provide new strategies for
lifestyle and risk management. In recent years, many medical and public
health authorities have endorsed the genetics so-called revolution while
governments have committed public funds to exploit the opportunities this
is seen to provide through research and application, for improving the health
of the public. In the UK, evidence of the Governments commitment to
exploiting genetics knowledge for the advancement of health can be seen in
the recent Genetics White Paper, Our Inheritance, Our Future: Realising the
Potential of Genetics in the NHS (Department of Health 2003). This document
outlines a vision of a range of future applications of genetic knowledge,
including testing for single gene disorders, improving preventive and
monitoring services for those at risk of developing disease and developing
new drugs and novel therapies (Department of Health 2003: 1219). The
decision, in 1999, to establish a UK population biomedical collection,
comprising genetic and personal medical information, later dubbed UK
Biobank, represents a significant move in the effort to realise the potential of
genetic research. Funded jointly by the Department of Health, the Medical
Research Council and the Wellcome Trust, this project is predicted to play
a substantial role in the prevention, diagnosis and treatment of illness (see
Department of Health 2003: 68, The Wellcome Trust et al. 2003: 6). From
the outset, however, the project has been the focus of a number of concerns
and criticisms, including those in relation to its consultation processes, its
methodology and access to and use of collected information.
As with others undertaking controversial biomedical research involving
the participation of human subjects, the partners of UK Biobank face the
problem of establishing support and legitimacy for their project. A major issue
is an apparent decline of public confidence in the governance of biomedical
research, especially in the wake of a number of recent highly-publicised healthservice 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 Wellcome
Trust, found that while respondents saw the benefits of science and most
were amazed by its achievements, there was a low level of confidence in
regulation and the Government (2000: 33). Increasingly, questions have
been raised about whether scientists can be trusted and whether research
should be more tightly regulated. The difficulty of establishing support for
controversial biomedical research can be seen as an aspect of a more general
problem of establishing trust in expert authority in late-modern societies.
Expert systems depend on trust, which is difficult to maintain in a context
of heightened risk-consciousness and reflexivity (Giddens 1991). As TaylorGooby 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 once
would have been relied on as sources of authority because of their professional status or accredited expertise (2000: 9). In recent science debates,
public scepticism towards expertise or the decline of trust has been a
recurring theme and is seen by some scientists as an impediment to scientific
innovation and development (see, for example, Institute of Ideas 2002). The
issue of restoring trust in science and scientists, and striking a balance between
the protection of the public and the facilitation of potentially valuable
research, has recently preoccupied science groups such as the UKs Royal
Society as well as policy makers. However, while the problem of establishing
consent and legitimacy for studies involving human subjects is general to
biomedical and genetic research, it is especially acute for UK Biobank given
the 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 and
how this is reflected in its governance. The concept of framing draws attention
to the way in which claims-makers organise facts and claims and ignore
others, in their efforts to shape public discourse and potentially public policy
(Miller and Riechert 2000: 45, Nisbet and Lewenstein 2002: 361). By controlling the facts, language, and the images, claims-makers can help create
the judgemental biases that underlie public policy and establish a framework
of expectations so that individual issues and events take on meaning as
public issues (see Nelkin 1995: 7273). The creation of such biases is not
necessarily a result of an orchestrated effort by claims-makers to mislead
publics by misrepresenting issues, as is sometimes claimed or implied by
critics of media portrayals of science and technology. Rather, it is likely to
occur through routine, taken-for-granted practices of writing or presentation
that are based on unquestioned assumptions about publics, about what they
need 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: the
historical and politico-economic conditions shaping the production and dissemination of texts, and the socio-cultural milieu influencing their reception.
Written documents, such as those pertaining to UK Biobank, are a product of
particular historical and social conditions, and assume meaning and are read
in light of shared meanings about genetics and its history and significance.
Particular images of genetics, aided by the use of specific metaphors, dominate
at different periods, corresponding with broader shifts in conceptions of the
body, self, society and science. Knowledge about genetics and its applications
is communicated via diverse popular cultural sources, such as television,
movies, magazines, diverse news media, and increasingly the Internet (see
Conrad 1997, 2001, Nelkin and Lindee 1995, Petersen 2001, 2002, Turney
1998, van Dijck 1998). Such sources collectively contribute to the discourse
on genetics and its benefits and dangers, which has the potential to influence
audiences responses to specific initiatives. For example, panic responses
to 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 its
power to alter nature (Petersen 2002). Similarly, public reactions to UK
Biobank and other genetic databases can be seen to mirror widely-held views
on biotechnology and the potential for its (mis)applications. Throughout its
history, biotechnology has been influenced by beliefs about its benefits as
well as its dangers. It is very much a product of regulatory regimes and
efforts to overcome publics anxieties about its uses and the threats posed to
such concepts as Nature, the natural and motherhood (Bud 1995: 2945, 306).
Published documents pertaining to the UK Biobank proposal, most of
which are accessible via the web, provide insight into a range of issues and
concerns in relation to the storage and use of personal genetic information.
They include reports of public consultations, outputs from government
enquiries and of the Human Genetics Commission, written evidence
presented by various groups to Parliament, publications released by the
projects partners, press releases and the draft protocol and ethics and
governance framework documents. A search of the Internet was undertaken
at regular intervals between August 2002 and December 2003 in order to
identify pertinent documents, using the keyword Biobank. Publications
referred to in collected documents, many of which were also available on the
web, were then retrieved. Informal discussions with officers at UK Biobank
assisted in identifying other published literature. Documents were then
analysed, 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 and
of responses to the concerns of critics. The analysis revealed that the UK
Biobank project has been discursively framed in overwhelmingly positive
terms, which has been achieved by the use of a specific language and by
reference to particular issues and facts. Documents have emphasised the
projects future benefits for the public, its competent management and its
adherence to good practice. Critics substantial concerns have either been
ignored or portrayed as having been adequately addressed through dialogue
and adherence to the projects ethics and governance framework. Overall,
the framing of the problem of organising consent has occurred within a wellestablished set of principles and practices, which has served to narrow public
debate about the substantial social and political implications of developing
large-scale genetic databases for research. Before proceeding further, however,
some comments on the historical and contemporary context shaping the
development 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 a
historically-specific discourse on genetics and its potentialities. This
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discourse, which began to emerge in the 1980s and 1990s, has focused
substantially on the medical and public health applications of genetic
research (Petersen and Bunton 2002, Condit 1999). The use of the metaphor
of the blueprint signalled a shift from the individual gene to the genome
and an exclusive concern with the individual and the family to encompass
social structure and commercial considerations (Condit 1999: 159177).
Developments in communications technologies in the last two decades have
profoundly shaped views on genetic information and its potential applications.
More and more, the image of the genome is of an information system that can
be read and edited. The metaphors of the code and the book became
predominant, and writers began to refer to the quest to break the genetic
code or to read the genomic book of life. In the 1990s, the Human Genome
Project the mapping of the human genome became a scientific and
commercial 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 products
and a new commodity bioinformation (Rose 2001a, b). Digital technologies
are seen as having the potential to unlock the secrets of life (Keller 1992)
and to allow for novel possibilities for storing, manipulating and transferring
data. Such technologies have made possible the development of genetic
epidemiology, a sub-discipline devoted to the study of gene-environment
interactions. Stimulated by advances in molecular biology, computer
technology and statistical modelling, genetic epidemiology seeks to describe
and explain the distribution of genetic traits and diseases in populations and
families. It is a field of research dependent on very large population-based
sample collections and access to detailed patient information such as that
promised by UK Biobank (see Martin and Kaye 2000: 168).
The proposal for UK Biobank (originally UK Population Biomedical
Collection) arose out of discussions between the Medical Research Council
(MRC) and Wellcome Trust, and the decision, in June 1999, to establish a
research resource to collect genetic and environmental information using a
prospective population cohort study. It was agreed to make this available to
researchers studying the causes of diseases in later life. In 2001, the project
was enthusiastically endorsed by the House of Lords Select Committee on
Science and Technology (Fourth Report) which recommended that the
Government provide sufficient earmarked resources for the project (House
of Lords Select Committee on Science and Technology 2001). Funding was
announced in April 2002, with contributions from the MRC, Wellcome
Trust (20 million each) and the Department of Health (5 million) (Parliamentary Office of Science and Technology 2002: 12). The contribution of
the 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 500,000
participants from the age group 4569 over a 10-year period, with recruitment
expected 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 Office

of Science and Technology 2002: 1). A document published by the projects
funders notes that participants will be randomly approached via their family
doctor, 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 a
representative sample from different areas of the country (MRC et al. 2003: 2).
The projects participants will be followed up periodically and information
will be tracked against the participants medical records, so that researchers
will be able to study the interplay between the participants genes, lifestyles
and 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 number
of countries (WHO 2002: 113114). Current and planned research projects
focus on particular diseases and on samples of varying size and use personal
medical information to different degrees (Martin 2001: 165169, Martin and
Kaye 2000: 16976). However, the new generation of genetic databases, such
as UK Biobank, differs in scope, format, and size, and in many cases involve
extremely large populations (WHO 2002: 114). A recent international study
of eight proposed genetic databases (including UK Biobank) found that
while the databases had a common goal (to search for susceptibility genes
for complex diseases, improve health and medical care in the region, and
to stimulate the local economy through expansion of the biotechnology
sector), they differed in certain respects, including funding, organisation,
subject participation, level of government and commercial involvement, and
population makeup and size (50,000 to one million participants) (Austin
et al. 2003: 42). Such databases, however, require as their ideal precondition
a universal healthcare system, general in the old welfare states, which have
the 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 research
to date has been a strong interdependence between the private and public
sectors. The former relies on the latter (in the UK, the NHS) to get access
to biological samples and human subjects, while the latter rely on the former
for the commercial exploitation of publicly-funded research. Close academicindustry links have been a feature of a number of large-scale genetic
databases to date; e.g. Iceland (deCODE), France (Genset), Sweden (UmanGenomics) and the USA (Genomics Collaborative) (Austin et al. 2003: 39
42; Martin 2001: 170). In the UK, funders of research are generally keen on
the commercial exploitation of publicly-funded research and on making
research 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 Framework

makes clear that ownership of the database and the sample collection will
remain with UK Biobank Limited (UK Biobank was established as a
company in December 2003.) As the Framework document states, Such
ownership conveys certain rights, such as the right to take legal action
against unauthorised use or abuse of the database and samples, and the right
to sell or destroy the samples. Further, it notes, Participants will not have
property rights in the samples. However, UK Biobank does not intend
to exercise all of these rights; for example, it will not sell samples (The
Wellcome Trust et al. 2003: 18). UK Biobank proposes to charge all users
an access fee, calculated on a sliding scale, so that total costs are proportionate to level of use (personal communication, Professor John Newton,
Chief Executive, UK Biobank 26 February 2004). While, during the early
stages of the project, the commercial sector had shown little apparent interest in the project, this may change as the project progresses. The Bioindustry
Association, which is the trade association for innovative enterprises in the
UKs biosciences sector, announced its support for the project, in a Position
Paper on UK Biobank, published in May 2003. It commented that, A
major potential benefit of Biobank is the development of new medicines,
diagnostics and treatments that could benefit the publics health. The
involvement of pharmaceutical and biotechnology companies is therefore
essential in order to maximize potential health benefits from Biobank (The
Bioindustry Association 2003: 4).
While academic-industry links may facilitate technology transfer across
sectors, they can also generate anxieties about academic conflicts of interest
and commercial monopoly (Martin and Kaye 2000: 169). The Icelandic
Health Sector Database, for instance, has been the subject of considerable
controversy, related in part to its market-driven approach, as well as to the
presumed consent of the population (Rose 2001a, b). As Rose notes, global
players such as SmithKline Beecham (now GlaxoSmithKline), and leading
figures in UK science, have had the advantage of seeing problems generated
by the approach of the Icelandic case. This has led them to recognise the
need for new hybrid structures between the state and the market and to work
slowly and consensually to get the support of all constituencies (Rose 2001b:
67). They have supported the development of appropriate ethical and
regulatory protocols and called for greater public understanding of patenting
issues in relation to genetic information. In its written evidence to the House
of Lords enquiry, Human Genetic Databases: Challenges and Opportunities, submitted in 2000, SmithKline Beecham argued that concerns
expressed about industry involvement in genetic database initiatives can be
assuaged by incorporating the best practice developed by companies such
as SB. In SmithKline Beechams view, this could be achieved by protection
of patient privacy and confidentiality and using an opt-in approach to
participation 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 as
it exists in individuals (House of Lords Select Committee on Science and
Technology 2000: 2, 7).
UK Biobank has been developed in a context of significant cultural
resistance to the commodification of the body and its parts associated with
biotechnology and fears about its implications (Boyes 1999, Hansen 1999,
Nelkin and Andrews 1998, Plsson and Hardardttir 2002, Whitt 1998).
Opinion polls suggest widespread suspicion about the use of human subjects
for DNA research along with worries about ethics and privacy (Everett
2003: 2). The ability of genetic databases to store data over the longer term,
and to link genetic information with health information, and potentially with
other data such as police and employment records, is of particular concern
to a number of groups. During the planning of UK Biobank, individuals
and researchers felt that some people may be deterred from participation in
genetics research if police are able to compare DNA recovered from crime
scenes with donor samples (Department of Health 2003: 689). UK Biobank
has 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 on
the front page of The Observer in September 2001 (i.e. some months before the
announcement of the funding of UK Biobank). The article noted that, The
genetic secrets of millions of Britains could be sold off to private drug companies under highly controversial proposals outlined in leaked government
documents. It referred to campaigners concerns that such information could
potentially be leaked to the police, employers or insurance companies, and
would be a step to privatising the nations DNA (Barnett and Hinsliff 2001: 1).
In 2002, GeneWatch UK, a not-for-profit public interest group devoted
to the ethical and safe use of genetic technologies, questioned whether the
project is a good use of public money and argued that it could undermine
public trust in medical research (GeneWatch UK 2002). It drew attention
to scientific objections with the project, the absence of assessment of alternative population-based measures, the potential for discrimination and loss
of privacy and the need for legal safeguards before volunteers were asked to
donate their samples to UK Biobank (GeneWatch UK 2002: 23). Scientists
themselves have had divided views on aspects of UK Biobank. While some
have been broadly supportive of the project and believe that it is scientifically
valid, others have seen it as politically conceived, as costly, and as inefficient
for the investigation of many of the diseases that are likely to be of greatest
interest (Barbour 2003: 1737). Criticisms have been made about the research
design, the process of awarding contracts for the participating scientific
groups who will collect the data (the project will involve a central hub in
Manchester and six regional spokes), and an apparent unwillingness to
address criticisms of the project which has created a great deal of unease
among scientists, even those who support it (Barbour 2003: 1738). And, in
March 2003, the House of Commons Select Committee on Science and
Technology 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 the
funders to support a politically driven project (2003: 4).

Investing in the publics health

It is against this background of concerns about the project that proponents
of UK Biobank have endeavoured to highlight the projects potential benefits
and its inclusive and ethical nature, making use of particular language and
metaphors. Published documents describe the project as an investment, a
resource, and a national asset, exploiting the insights derived from the
Human Genome Project, for potential significant economic and public health
outcomes in the future. In its submission to the House of Lords Select Committee on Science and Technologys enquiry on human genetic databases, the
Sanger Centre (which contributed to the sequencing of the human genome)
emphasised the projects potential economic benefits. It drew attention to
initiatives in the USA and to the serious economic and political risk in
allowing one country to take sole charge of such an important resource
(House of Lords Select Committee on Science and Technology 2000). In its
Fourth Report, the House of Lords Select Committee on Science and
Technology used a similar economic argument (it is vital for scientific,
medical and economic reasons to maintain this competitive advantage) in
justifying its support for research involving human genetic databases (2001:
4.31). The Protocol for the UK Biobank notes that Biobank represents a
substantial, broad and accessible investment in post-genome research and
that the project will serve to develop national expertise and infrastructure in
genetic and molecular epidemiology (The Wellcome Trust and MRC 2002:
30, emphasis added). The Human Genetics Commission (HGC) argues that
large-scale population genetic databases, established with and supported by
public funding, constitute a national asset (HGC 2002: 24; emphasis added).
The use of bank in UK Biobank, indeed, suggests that the collected information will prove to be an investment or asset, benefiting individual
investors 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 Governance
Framework describes UK Biobank as an ambitious project to build a large
multi-purpose data resource (Interim Advisory Group, 2003: 3). The draft
Framework itself notes that the UK Biobank aims to build a major
resource to support a diverse range of research that will in turn improve the
prevention, diagnosis, and treatment of illness and the promotion of health
throughout society (The Wellcome Trust et al. 2003: 6). In its written
submission to the House of Lords Science and Technologys enquiry into
human genetic databases, the Wellcome Trust describes UK Biobank as an
experiment in how genome information may be exploited with broader
implications 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 genomic

information and patient care, including the introduction of pharmacogenomic
approaches to treatment and therapy and could be a testing ground for
future NHS database developments (House of Lords Select Committee on
Science and Technology, 2000).
The projects partners have been at pains to underline the projects
scientific significance, its uniqueness and timeliness, and its potentially useful
medical and public health applications, using language that underlines its
momentous 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 also
emphasised the projects significance as a research resource and a contributor
to the public health endeavour, in a press release statement on the genetics
White 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 21st 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 potential
scientific value and public health benefits of the project. However, readers
are provided with few details about the nature of these benefits and no
evidence of beneficial outcomes from similar smaller genetic databases
developed in the past. There is no acknowledgement of the complexities of
the genetic basis of common diseases that some writers believe will make
accurate prediction difficult if not impossible (Holtzman and Marteau 2000).
Further, there is no mention of the potential difficulties of disentangling
genetic and lifestyle contributions and of how environmental determinants
will be assessed. Potential problems with undertaking research on a sample
combining lifestyle information, which is qualitative and context dependent,
with the hard data of DNA was raised in Parliament in 2002. It was noted
that there is a danger of relying on research participants patchy recollections
of past behaviour and exposure to environmental risks that will make it
difficult to disentangle genetic and environmental factors, which have
important implications for the findings of Biobank. The fear expressed was
that it will skew towards over-emphasising the genetic influence on disease
processes because it is the only thing on which Biobank will provide hard
data (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 personal
genetic information receive no mention. Here, as elsewhere, the public is
assured that UK Biobank is acting for the common good and that any
benefits will be shared and income invested. The first public draft of the
UK Biobank Ethics and Governance Framework, for example, notes, under
a heading Benefit sharing, that the biotechnology and pharmaceutical
industries can play an important role in realising health benefits in a practical
sense, by developing and improving the use of biomedical products. Further,
Any income that UK Biobank secures from access fees or intellectual property 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 seriousness
with which they have considered the views of the public on the project.
Consequently, they have undertaken a number of consultations. This has
involved 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 specific
groups (e.g. people with disabilities or diseases, religious and community
leaders) was undertaken in 2000, as well as a survey of GPs and practice
nurses about their role in the project. Group discussions (each with about 20
people) with people from the relevant age group (4569) from Hertfordshire,
the West Midlands and Glasgow were then conducted in 2002 to explore
the ethical and management issues. A summary of the findings of the
consultations was posted on the web, and an assurance was offered that
consultation is an on-going process: The findings represent the beginning of
an in-depth consultation with the public and professional groups, which will
help 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 in
general: as a scientific activity it seemed mysterious and sinister. More specifically, it was linked to cloning, genetically modified foods, and designer
babies (The Wellcome Trust and MRC 2000: 3). Although, according to one
report, people were found to be favourably disposed to the idea of research
per se, views of genetic research were varied. While some felt that it had
potential benefits, others expressed reservations, some more serious than
others. The report noted that, Concerns were greatest in the context of
research on certain genetic therapies and on disabilities, particularly where
these are identified before birth (2000: 3). People were found to have mixed
views about the Wellcome Trust and MRC proposal. A range of specific
issues of concern were raised, including possible misuse of samples for
cloning or other questionable purposes, potential discrimination against disabled people, loss of participants anonymity, profiteering by pharmaceutical
and biotechnology companies, and employers and insurers gaining access to
information and misusing it. The report noted that some special interest
groups also questioned the involvement of the MRC and the Wellcome
Trust in the project, believing that both organizations were subject to pressure
from pharmaceutical companies and the Government, and too willing to
work to an agenda against the interests of people with disabilities (2000: 4).
However, These worries were often allayed by explanation of why information would be helpful to researchers, and by reassurances of safeguards
against unauthorized access (2000: 45).
Consultations undertaken by People Science and Policy Ltd (2002) for
the MRC and the Wellcome Trust revealed particular concerns about
commercial involvement in the project. The consultants report noted that
people were worried that companies would focus on profitable diseases
rather than major healthcare issues and wondered whether it would personally benefit them (2002: 3). As in the other, earlier consultation exercise, the
sceptical 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 focus
groups, have been used extensively in recent years by various authorities and
groups including the Wellcome Trust to ascertain public views on science
and other issues (see, for example, Bailey 2001, Coote and Lenaghan 1997,
Joss and Durant 1995). By being seen to consult the public through the
above means and then making findings accessible (for example, on the web)
and, where necessary, offering assurances and explanations, the UK Biobank
partners have been able to present themselves as acting openly and democratically and taking cognisance of public concerns. The adequacy of this
process and the assumptions that underlie it are never scrutinised. There is
no acknowledgement of the limitations of such consultative mechanisms,
including problems with their assessment, and questions about whether the
participant groups are representative of the populations from which they are
drawn (Petersen and Bunton 2002: 18890). Despite discovering a number
of specific worries about UK Biobank during its consultations, the
projects partners do not always explain how these will be taken into account
in the subsequent development of the initiative. Significantly, the House
of Commons Select Committee recently questioned the adequacy of UK
Biobanks 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 use
of the language of citizenship, particularly in references to participants
contribution to helping others and to altruism. The first public draft Ethics
and Governance Framework (EGF) for UK Biobank, released for comment
in September, 2003 noted that, Participation will be cast as an opportunity to
contribute information that in the long term may help enhance other peoples
health (The Wellcome Trust et al. 2003: 9, emphasis added). In the published
minutes of a consultation with UK industry (UK Biobank: Consultation
with Industry Workshop), the potential benefits for others in the future are
again emphasised: The UK Biobank is a long term endeavour and the
altruistic contribution of participants will benefit future generations. In the
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same paragraph, it is noted that, The contribution of participants to the

project should be seen as a gift to biomedical science in the public interest
(Minutes of consultation with industry workshop 4 April 2003: 4, emphases
added). These references to research participants altruistic contribution to
the health of future generations mirror those found in other recent publications on genetic research.
For example, the Human Genetics Commission report, Inside Information,
notes, in a section, General principles for the way we treat personal genetic
information:
Genetic knowledge may bring people into a special relationship with one
another . . . Sharing our genetic information can give rise to opportunities
to help others and for other people to help us and we have a common
interest 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 feel
pushed into taking part in genetic research, when they make this decision
people should be aware that by taking part they might help those suffering
from disease (HGC 2002: 7, emphases in original).
Words and phrases such as altruistic, gift, sharing, opportunities to
help others, common interest, help those suffering from disease and so on,
have strong resonance in liberal democracies, especially with a broadening
of the concept of social citizenship and an emphasis on citizen duties
(Petersen and Lupton 1996: 13). Use of the term genetic solidarity, used at
various points in the Inside Information report, however, would seem to
signify a substantial modification of the concept of social solidarity formulated during the development of the welfare state. The term solidarity in its
conventional usage implies cohesion, the sharing of aims and interests, and
single-minded unity of purpose (Marshall 1994: 503). The use of genetic
may seem odd when used in conjunction with solidarity, but is consistent
with what Miringoff (1991) has identified as the increasingly prominent
worldview of genetic welfare, whereby genetic considerations tend to
prevail over social ones and there is a change in our perceptions of rights,
responsibilities and duties. It is the language of an emergent biological
citizenship, involving the linking of biology and identity (Petryna 2002: 14).
The concept of genetic solidarity and altruism emphasises the mutuality
of interest in promot[ing] the common good: This sharing of our genetic
constitution not only gives rise to opportunities to help others but it also
highlights our common interest in the fruits of medically-based genetic
research (HGC 2002: 16). The above reference to the gift to biomedical
science in the public interest, suggests, following Titmusss (1970) classic
formulation of blood donation in the British welfare state, a transaction
which stands outside economic calculation and which carries no explicit
right, expectation or moral enforcement of a return gift (citing Frow 1997:
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105). However, interestingly, this position conflicts with a view expressed

earlier by the Human Genetics Commissions report, Whose Hands on
Your Genes?, that raised the question of whether the donor of a sample
given purely for research purposes makes a gift of the sample (either
unconditional or with conditions specifying what it might be used for)
(2000: 24). An unconditional gift, it explained, entitles the recipient to do
what he or she wishes to do with it, in the same way as the recipient of an
ordinary gift may use the gift as he wishes. However, it noted that, This
view conflicts with current moral opinion, the clear direction of which is to
recognise that the donor has a moral interest in what is done with bodily
samples (HGC 2000: 24).

Informed consent and rights

Evidently recognising that participants in UK Biobank have a moral as well
as a personal health interest at stake, the Group that prepared the first
public draft UK Ethics and Governance Framework have been at pains
to spell out participants rights in relation to informed consent and to
sharing the benefits of the information that has been donated. The draft
Framework emphasises that the consent of participants will be based on an
explanation and understanding of the purpose of UK Biobank and the
various 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 lets
participants choose variously to allow use of some data about themselves
but not other data, or by certain kinds of researchers but not others, or for
certain purposes but not others (Interim Advisory Group 2003: 7). It
notes that, Given the large organisational and long time scales of the UK
Biobank project, and the involvement of diverse participants around the
land, contacted via many different channels, and data potentially being used
in 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 on
medical records, it is argued that the project must proceed and be presented
emphatically as being a research endeavour, not a healthcare endeavour.
Nevertheless, it notes, It would seem that a few pieces of information almost
unavoidably must be given to volunteers. An example is when blood
pressure is taken during the enrolment meeting where, it would be odd,
perhaps even offensive, to take the readings but not tell the person wearing
the blood-pressure cuff what they are (Interim Advisory Group 2003: 8).
Clearly, the co-ordinators of UK Biobank have been presented with an array
of novel ethical and regulatory challenges in the development of this project,
related to its large participant group, long time-span, and the need adequately
to address concerns about the use and security of collected information.
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Consequently, the first public draft Ethical and Governance Framework

includes considerable discussion about such issues as selection and consent
procedures, provision of health information to participants, participants
rights, confidentiality, stewardship of data and samples, research access to
data and samples, management and accountability, external governance and
benefit sharing. It also proposes a strategy for handling contingencies in
the event that UK Biobank has to close or make other substantial transitions
in 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 forced
to chart new terrain in the governance of genetics a point stressed by
Professor John Newton, Chief Executive of UK Biobank, at the launch of
the Framework; namely, that it will set a new standard for ethics and
governance in this area (MRC 2003).
Assurances are offered that consent will be freely given and fully informed
and that information will be secured and only used for research that is likely
to improve health. In particular, proponents have emphasised differences
between UK Biobank and the Icelandic Health Sector Database, which, as
noted, has been the source of controversy, in consent procedures and in views
on ownership and use of material. For example, The Wellcome Trust, in its
written evidence to the House of Lords Select Committee enquiry on genetic
databases, acknowledged negative public responses to Icelands approach to
the storage and use of patient records; i.e. automatic opt-in. It noted that this
had led to some public antagonism and subsequent international response
to the project especially in terms of links to commercial exploitation. A
particular strength of the UK project, it argued, was an opt-in voluntary
approach; however, feedback and communication will be necessary to maintain the patient volunteers commitment and contact with the organisation in
the long-term (House of Lords Select Committee on Science and Technology
2000). In the first public draft Ethics and Governance Framework, it is noted
that UK Biobank will develop an overall policy and detailed terms of reference, addressing fairness and transparency of decision-making, the handling
of conflicts of interest and the prioritisation of use of samples. UK Biobank
is described as a steward of the resource whose purpose is to generate and
disseminate new knowledge to benefit the health of the public in the UK and
elsewhere (The Wellcome Trust et al. 2003: 18, 27). In short, proponents
have emphasised the open and democratic nature of the project voluntary
participation, feedback and communication and its commitment to the
public good. There is an evident attempt to distance the project from the
Icelandic Health Sector Database that was the focus of much critical attention 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 Biobank
is that the project is ethically sensitive, competently managed and oriented
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to the broader public interest; that is, worthy of our trust. Pronouncements
of adherence to ethical procedures appear repeatedly in published documents
relating to UK Biobank, offering reassurance to potentially anxious publics.
Singly and in combination, these pronouncements lend the impression that
ethical 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. It
provides 18 questions and answers covering the programme, including what
is required of participants and the use of and access to information. The
question-answer format, with carefully crafted responses, assists in dispelling
any doubt that people may have about the assurances that are offered. For
example, in response to the question, Who will own the information and
who 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, the
public, can trust the projects co-ordinators to do the right thing by us
and that the assurances offered about the benefit and safety of the project
can be believed. The question of whether the frequently asked questions
are indeed the ones that people would wish to ask, and whether the
responses are satisfactory remains to be seen.

Conclusion
Scientists and policy makers face a major challenge in establishing consent
and legitimacy for controversial biomedical research involving the participation of human subjects. As noted, this problem is acute for UK Biobank
given 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 positive

terms. First, a range of documents pertaining to UK Biobank emphasise the
projects scientific significance, its value as a resource, and its future public
health benefits, thus conveying the message that the project is deserving of
support. Second, the project is portrayed as being inclusive and as sensitive
to the concerns and welfare of the public. The problem of organising
consent, however, has been framed narrowly in terms of adherence to a wellestablished repertoire of institutional mechanisms, such as consultations
and the use of advisory groups. There is little evidence of reflection on the
adequacy of such mechanisms for dealing with the unique challenges in
gaining consent and legitimacy for UK Biobank, given its scale and the
various criticisms and concerns raised. There is no acknowledgement of the
existence of multiple publics and diverse and often conflicting perspectives
on, and interests in relation to, new genetic technologies and their applications, and of the different ways in which public opinion about genetics may
be gauged (see Condit 2001).
The regulatory response to UK Biobank, and to other controversial
biotechnology research undertaken in Britain in recent years, has been
substantially shaped by the 1999 controversy surrounding GM crops. This
caught policy makers unaware and led to an overhaul of the frameworks of
governance for biotechnology. An advisory and regulatory framework has
been developed, with an emphasis on transparency, and dialogue between
regulators, policy makers, industry, interest groups and consumers (Weldon
2004: 171). For instance, the Human Genetics Commission, the UK Governments advisory body on human genetics (including genetic databases),
was created in part for the purpose of consulting and engaging in debate
with citizens about the future of biotechnology in Britain (Weldon 2004:
171). As in the US, the emergence of commissions as decision-makers and
an emphasis on a principle-based system of ethics has served to thin
public debate (Evans 2002). Substantive (thick) debates about the ultimate
ends of human genetic research are obscured by a focus on formal rational
(and universalist) arguments about the most efficacious means of achieving
predetermined or assumed ends such as autonomy (Evans 2002: 13). The
question of how to best ensure informed consent, for example, has been
posited as a fundamental issue confronting UK Biobank, despite recognised
difficulties of applying principles of consent, which were developed in the
medical context, to population collections (see, for example, Chadwick and
Berg 2001, Kaye 2004, Weldon 2004).
UK Biobank offers important insights into how scientists and policy
makers may seek to engender trust in biotechnology research which is
contentious and which raises novel problems for governance. To date, there
is no agreement internationally on the regulation of genetic databases or
practical advice on how to manage them (Callan and Gillespie 2004: 4). In
this context, it is important to understand how proponents of such collections 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 authorities
seek to establish trust and the likely implications for future biotechnology
research of a decline in trust. As noted, genetic research databases are not
new in the UK. However, large-scale population collections such as UK
Biobank are novel in their scale, organisation and long time span which
presents many uncertainties and risks and challenges for their governance.
A restricted public discourse about UK Biobank, both its potential benefits
and its dangers and limitations in solving major health problems may not
only adversely affect public responses to this project but also contribute to a
decline of public confidence in the regulatory systems governing biotechnology and science more generally. In short, the question of how UK Biobank
engages diverse publics, and how it is seen to address the particular concerns
and criticisms that are raised, may determine whether people in the future
will feel confident in entrusting authorities to secure their genetic health.
Address for correspondence: Alan Petersen, School of Sociology, Politics and
Law, Faculty of Social Science and Business, University of Plymouth, PL4 8AA
e-mail: a.petersen@plymouth.ac.uk
Acknowledgements
I wish to thank Shirlene Badger for our early discussions about this article and for
suggesting a number of references. I thank Professor John Newton and Dr Shaun
Griffin, from UK Biobank, for offering some useful items of information on the
Project. Finally, I am grateful to the referees for their encouraging comments and
valuable guidance for revision.

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