Professional Documents
Culture Documents
271292
Alan
O
Engendering
riginal
Petersen
Article
trust in&UK
Biobank
Blackwell
Oxford,
Sociology
SHIL
0141-9889
xxxx
2
27
Blackwell
2005
UK
Publishing,
ofPublishing
Health
Ltd.
Illness
2005
Abstract
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
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
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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.
275
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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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).
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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).
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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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