Biobanking: Social,
Political and Ethical Aspects
Richard Tutton, ESRC Centre for Economic and Social Aspects of Genomics (Cesagen),
Lancaster University, Lancaster, UK
Prospective, population-based biobanks designed for
research into genetic, environmental and lifestyle factors
associated with common, complex diseases or the genetic
basis of drug response have garnered significant interest
over the past 10 years from bioethicists, social scientists,
lawyers and other commentators. There are a series of
interrelated but distinct social, political and ethical issues
raised by biobanking: the challenges of creating govern-
ance structures that win public confidence in these novel
and uncertain scientific initiatives; the establishment of
appropriate systems of consent; determining the rights of
ownership, commercial exploitation and benefit-sharing
among different stakeholders and the ways biobanks
invoke ideas about human population differences and
might serve to help address the health needs of minority
groups in society.
Introduction: Biobanking Today
In the past 10 years, a sizeable literature has been produced
on the social, ethical, legal and commercial dimensions of
biobanking. Several edited anthologies have been pub-
lished (Arnason et al., 2004; Dabrock et al., 2010; Eriksson
and Hansson, 2001; Faulkner-Sleebom, 2008; Gottweis
and Petersen, 2008; Häyry et al., 2007; Tutton and Corri-
gan, 2004), and at least one major review of the literature
has already appeared (Hoeyer, 2008). The term biobanking
itself describes a diverse range of research and clinical
activity, ranging from research in the epidemiology of
common complex diseases, pharmacogenetics, rare genetic
diseases, oncology and stem cells, to therapeutic
ELS subject area: Science and Society
How to cite:
Tutton, Richard (January 2010) Biobanking: Social,
Political and Ethical Aspects. In: Encyclopedia of Life Sciences (ELS).
John Wiley & Sons, Ltd: Chichester.
DOI: 10.1002/9780470015902.a0022083
ENCYCLOPEDIA OF LIFE SCIENCES & 2010, John Wiley & Sons, Ltd. www.els.net
Advanced article
Article Contents
. Introduction: Biobanking Today
. Governance and Legitimation of Biobanks
. Consent in the Era of Biobanking
. Ownership, Control and the
Economies of Biobanks
. Summary
Online posting date: 15th January 2010
applications such as blood transfusion or organ trans-
plantation. Biobanks are situated in a range of institutions
such as hospitals, universities, pharmaceutical companies
and charities and vary in provenance, size, composition,
methodology, economy and governance. There is dis-
agreement among academic commentators, scientists and
policymakers about what defines a biobank and whether
this is the best term to use, with some preferring expressions
such as ‘genetic database’ instead (Corrigan and Tutton,
2009; Gibbons et al., 2007). Despite such ambiguities, there
are strong expectations among scientists, policymakers and
others that biobanks will play an important part in
improving future human health and in bringing substantial
economic benefits to those who use and invest in them.
This article cannot give adequate coverage to all of the
research and therapeutic forms of biobanking that are
ongoing today. Given that prospective, population-based
biobanks designed for research into genetic, environmental
and lifestyle factors associated with common, complex
diseases or the genetic basis of drug response have garnered
the most interest from commentators, this article will
concentrate on this type of biobanking. It will acknow-
ledge, however, the discussions led by those who have
looked at cancer (Dixon-Woods et al., 2008) and stem-cell
biobanking (Brown and Kraft, 2006) where appropriate.
Prospective, population-based biobanking has become a
global activity, with initiatives appearing in Québec,
Scotland, Japan, the United States, Newfoundland, Tai-
wan, Singapore, China, Germany, the United Kingdom,
Iceland, Estonia, Sweden, India and Western Australia to
list but a few places. Although most of these are ongoing
concerns, some have met with local opposition or
encountered difficulties related to their financing or com-
mercialization models and have either shut down or con-
tinued in different forms (Rose, 2006).
This article gives an overview of the principal social,
ethical and legal issues that commentators have debated in
relation to biobanking. Different groups of researchers
have contributed to these debates, including bioethicists,
lawyers, sociologists of science and anthropologists, as well
as geneticists, biologists and others. This article focuses on
the following clusters of issues: debates about the appro-
priate form of consent for biobanks; questions of owner-
ship, property and the broader economic context to
biobanking; the way biobanks draw on and reflect ideas of
1
 Biobanking: Social, Political and Ethical Aspects
national identity, citizenship, and the extent to which they
succeed in being inclusive of racial/ethnic minorities; and,
to begin with, the particular challenges to governance that
biobanks present and how they have sought their social and
political legitimation.
Governance and Legitimation of
Biobanks
Sociologists of science and political scientists have drawn
attention to the governance frameworks of science and
technology within which biobanks have appeared and the
problems faced by their institutional funders and sup-
porters to establish their social and political legitimacy.
Biobanks emerged at a time when policymakers and com-
mentators were concerned with public controversies sur-
rounding technological and scientific issues such as
cloning, gene therapy, genetic testing and genetically
modified (GM) food, and were recognizing the need ‘to
build and maintain high levels of public trust through the
effective governance of _ emerging biotechnologies’
(Martin, 2001, p. 171). Throughout the 1980s and 1990s,
networks of research and governance changed with greater
ties between academic and commercial organizations and
in some countries there was a move to facilitate the com-
mercial exploitation of publicly constituted resources,
effectively blurring the lines between the private and the
public. Many biobanks are situated on these contested
‘blurred’ lines between the public and the private in ways
that have sometimes been controversial. In the 1990s, we
also saw the emergence of an institutionalized ELSI (eth-
ical, legal, social implications) research agenda in human,
animal and plant genomics in North America and Europe,
as well as the introduction of new advisory bodies focusing
on matters related to genetics, such as the Human Genetics
Commission (HGC) in the United Kingdom, which
involved greater lay involvement. Civil society groups also
became active during this time, addressing issues related to
animal, plant and human genetics research.
Against this background, and faced with concerns about
trust, data security, confidentiality, consent, discrimin-
ation and commercial interests expressed by academic
commentators and policy actors, the organizers of many
biobanks have had to build legitimation for their initiatives
(Petersen, 2006; Salter and Jones, 2005). This has been
particularly important for population-based prospective
biobanks because many receive public funding and depend
on successfully enrolling a great number of volunteers.
Given this, a number of them have undertaken various
forms of community and public engagement (Godard
et al., 2004). Sociologists as well as policymakers have
found many of these consultative activities to be prob-
lematic, pointing to the way they are narrowly defined and
controlled to the exclusion of addressing more substantial
issues (Petersen, 2007; McNamara and Petersen, 2008;
Walmsley, 2009). However, biobanks in other countries
2 ENCYCLOPEDIA OF LIFE SCIENCES & 2010, John Wiley & Sons, Ltd. www.els.net
such as Japan appear to have been developed with little
consultation with the public or the academic community
(Triendl and Gottweis, 2008).
In addition to public engagement, it is also argued that as
part of their strategy to achieve legitimacy organizers of
biobanks have sought to enrol bioethicists to negotiate the
way through the political, ethical and legal uncertainties
that they face (Salter and Jones, 2005). As a group, bio-
ethicists have recognized expertise and competence in the
area of biomedical governance and have an authoritative
claim to policy-relevant knowledge. It is also fair to say,
however, that other professionals with similar credentials
such as social scientists and lawyers have also been
recruited to work alongside scientists, clinicians and others,
including consumer or patient representatives, on the
issues that biobanks face. A number of biobanks have
created their own in-house oversight committees. The UK
Biobank, for instance, established a semi-independent
Ethics and Governance Council (EGC), which was per-
ceived to be crucial in securing public confidence in the
project. With a bioethicist as its first chair, the EGC was
created long before UK Biobank began its recruitment of
volunteers in 2006. It has been argued that bodies such as
the EGC represent a ‘regulation plus’ model (Haddow
et al., 2007) whereby biobanks provide an additional layer
of scrutiny to the existing structures of governance, with
the aim of securing public confidence in them.
Two particular issues in the governance of biobanks –
which have impinged directly on questions about their
legitimacy – have attracted particular attention: the first
concerns the process by which individuals consent to
deposit tissue samples and personal information with
biobanks; and the second relates to the rights of ownership,
control and financial benefit that comes from the use of
these samples and data by third parties that include com-
mercial organizations. These will be addressed in turn in
the sections that follow.
Consent in the Era of Biobanking
The issue of consent has been a dominant concern of much
writing about prospective genomic or epidemiological
databases (see Beskow et al., 2001; Clayton, 2005; Shickle,
2006; for a review of this extensive literature see Hoeyer,
2008). The prominence given to the consent question comes
in part from what was happening in Iceland in the late
1990s. The plan developed by deCODE Genetics with the
support of the Icelandic Government and Parliament was
to create the Health Sector Database – essentially an
electronic patient record system – that would be combined
with a genealogical database (which was already in the
public domain) and a deoxyribonucleic acid (DNA) data-
base. The Health Sector Database was to operate on a
presumed consent basis, with a concession that individuals
could opt-out within a certain period to prevent their
medical records from being automatically included in the
database. This was seen as going against international

norms and faced a significant legal challenge in the
Supreme Court of Iceland that ruled against this approach
(Palsson, 2008). However, further to this, it has been sug-
gested that many observers were confused about what was
happening in Iceland and believed that presumed consent
also extended to the genetic database, which was not
the case (see Hoeyer, 2008). This misunderstanding
informed much of the critical commentary on Iceland and
contributed to consent becoming a highly controversial
issue in relation to genomic and epidemiological databases.
See also: deCODE and Iceland: A Critique
Moreover, as debates about the status, ownership and
control of human tissue and genetic information came to
the fore in the 1990s in light of its newly commercialized
value, whether we were talking about things or persons, or
perhaps something in between became a significant point of
contestation (Knoppers and Laberge, 1995). This was
especially the case because, with molecular DNA analysis,
tissue samples became a source of genetic information
about individuals that was perceived to be revealing
something essential about them (Hoeyer, 2008). These
observations about the link between tissues, DNA and
human personhood seem to be borne out by some of the
debate about the type of consent with which biobanks
should operate. Given that prospective biobanks are con-
figured as resources for multiple researchers to access and
use over a potentially long period of time, it is not possible
to tell individuals how their samples and genetic or other
kind of information might be used in the future with any
degree of specificity at the time when they are enrolled.
Some argue that seeking re-consent from individuals over
time as new studies apply to use the biobank is likely to be
expensive; refusals or nonresponses could undermine the
integrity of both the intended research and the resource
itself and it would be burdensome to the individuals being
recontacted on potentially several occasions. The fear is
that they might even develop negative attitudes towards
biomedical research (Berg, 2001). This has led some to
speak about a crisis involving consent in the context of
biobanking (Lipworth et al., 2006).
In the United States and Europe, there have been dif-
ferent institutional responses to this situation: in the for-
mer, the issue of informed consent has become bound up
with the identifiability or anonymity of samples. US pol-
icymakers have broadened the category of ‘nonidentifiable’
samples to include those where the investigator accessing
the biobank is unable to link that sample to a named
individual (Elger and Caplan, 2006). When samples are
rendered as ‘nonidentifiable’, informed consent is not
deemed to be necessary for their continued and future use.
Therefore, in the US context, informed consent is linked to
questions of individual identifiability and concerns about
privacy and confidentiality. When the personal identity of
individuals is protected, informed consent is not required
for subsequent use of the samples. However, this expansion
of nonidentifiability is not without its problems, since the
link between the sample and the individual still remains,
albeit in an encrypted form held by the biobank, and could
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Biobanking: Social, Political and Ethical Aspects
be used in circumstances such as criminal investigation or
for other purposes. For instance, after the tsunami in 2005,
the Swedish Parliament temporarily amended legislation
related to medical biobanks to permit access to identify
bodily remains (Holmlund et al., 2006).
An alternative approach followed by a number of bio-
banks in Europe and Asia has been to move from informed
consent to broad consent, supplemented by two compen-
satory measures: first that ethics committees approve of all
future research using the biobank in question and second,
that individuals have a right to withdraw at any time
(although what this means in practice is not always clear)
(Elger and Caplan, 2006). Those who advocate broad
consent cite evidence on the views of public groups to
support their case, referring to studies that indicate that
people do not attach a similar priority to informed consent
as ethicists (Chen et al., 2005). This point is largely sup-
ported by empirical research on individuals’ experience of
being participants in biobanks by anthropologists and
sociologists (see Hoeyer, 2008). Lunshof et al. (2008) go
further in their argument that the promise of privacy and
confidentiality is untenable in the era of genomic research
that is predicated on the networking and sharing of vast
quantities of data. Researchers should adopt an ‘open
consent’ model that recognizes and documents the fact that
individuals will have their personal information disclosed
to third parties both now and in the future.
There are also discussions about alternative ethical
frameworks to informed consent such as those based on
solidarity and equity in relation to biobanking. Chadwick
and Berg (2001) observe that the rules on informed consent
were developed in the middle of the twentieth century and
argue ‘now might be the time for a fresh ethical perspective’
(p. 321). They suggest that individuals have a duty to par-
ticipate in biobanks where the subsequent research using
these resources could benefit wider society and future
generations, an act of solidarity similar to providing blood
for transfusion or organs for transplantation. These ideas
about solidarity and equity are not unproblematic, how-
ever, in a time when there are significant commercial
interests in banking human tissue.
Ownership, Control and the
Economies of Biobanks
Recent work on the political economy of the life sciences in
the twenty-first century by sociologists of science and
technology points to the broader economic context in
which biobanks must be situated. Biobanks, whether for
epidemiological, pharmacogenetic, cancer or stem-cell
research, are positioned as having a pivotal role in the
‘bioknowledge economy’ (Tupasela, 2006). With their
promise to utilize the genetic or biological characteristics of
populations as resources for the production of intellectual
property, biobanks are seen as key elements in the pro-
duction of ‘biovalue’, by which life itself is seen as
3
 Biobanking: Social, Political and Ethical Aspects
productive of surplus value (Cooper, 2008). In addition to
their potential to be resources that will improve human
health, biobanks could also provide the means for boosting
national or regional biotechnology and the pharmaceutical
sectors. In countries such as Iceland, Estonia and Latvia,
biobank initiatives were represented as ways of establishing
an economic resource out of the ‘raw materials’ of DNA
samples, producing profit for private companies and
bringing inward investment in capital and jobs to these
economies (Abbott, 2001; Merz et al., 2004; Mieszkowski,
2003). Such expectations about the economic benefits of
biobanks in the context of international competitiveness in
the new ‘bioeconomy’ are important elements in the story
of contemporary biobanking (Fortun, 2008).
As already suggested, the debate on consent is entangled
with questions of ownership, commercial access and
benefit-sharing. With the exception of private cord blood
banking, where individuals pay to have tissue stored for
potential future use (see Brown and Kraft, 2006), most
types of biobanks operate on the principle that individuals
would voluntarily and freely provide biological samples
and personal information. The transaction between the
biobank and the volunteer or patient is, therefore, a non-
commercial one and has sometimes been conceptualized as
a ‘gift relationship’ – a deliberate echo of Richard Titmuss’
use of that expression in relation to blood donation (Tutton
and Corrigan, 2004; Waldby and Mitchell, 2006) – to
emphasize that people should be acting altruistically.
Access to and use of biobanks, however, might very well be
on commercial terms, with biotechnology and pharma-
ceutical companies as well as universities as likely future
users of these resources. This has led to a debate about
whether and on what terms such organizations should
financially benefit from research conducted using samples
freely provided by individuals. The dominant view in bio-
ethics literature and in guidelines produced by bodies such
as the Nuffield Council on Bioethics (1995) is that to secure
the promised benefits to health in the form of new diag-
nostics or drugs, commercial actors must be entitled to
intellectual property on products developed as a result of
research using biobank resources. However, research on
public views on access to prospective, population-based
epidemiological biobanks points to a strong preference for
only health services and academic research organizations
to have use of these resources (Shickle et al., 2002). Other
research reports a more variable picture of public oppos-
ition and ambivalence to commercial companies accessing
biobanks to which individuals have freely contributed
samples (Haddow et al., 2007). See also: Commercial-
ization of Human Genetic Research
The debate about ownership, commercial access and
benefit-sharing in relation to biobanking stems in part from
broader concerns with the commodification of the human
body (Andrews and Nelkin, 2002), the patenting and selling
of genetic information (Knoppers and Laberge, 1995) and
long-standing debates in legal theory about property in the
human body (Grubb, 1998). These debates are informed by
case law such as the much-discussed judgement of the
4 ENCYCLOPEDIA OF LIFE SCIENCES & 2010, John Wiley & Sons, Ltd. www.els.net
Supreme Court of California on John Moore v. Regents of the
University of California (Boyle, 1992). The plaintiff, John
Moore, claimed that he held property rights in the tissue
excised by doctors who performed his splenectomy and who
then used this tissue to develop a cell line, which had potential
commercial value. The court’s decision to deny his action was
based on the reasoning that tissue in itself could not be con-
sidered property. Only when it was turned into a cell line and
had been invested with and altered by human labour, could it
become property. Since Moore did not own the tissue
removed from his body, he had no claim over the cell line and
no entitlement to a share of profits made from its commercial
development. The Moore case has become a touchstone for
commentaries on the ethical and legal issues involved in the
use of human tissue and is a frequent point of reference for
regulatory, advisory and ethics bodies. For some legal com-
mentators, the case exemplifies that ‘while property rights are
routinely granted in respect of human material, this is usually
done to the exclusion of the one person who is central to the
entire enterprise, namely, the individual from whom the
material has been taken’ (Laurie, 2002, p. 304). This is not
only unjust but, as the argument goes, granting property
rights could be a way of relegitimizing research and over-
coming the ‘crisis in confidence’ in its governance by giving
people more control over what happens to their tissue
(Laurie, 2002). Biobanks would therefore not solely rely on
consent but incorporate a system of property rights.
Such arguments have not gone unchallenged, however,
from a number of quarters. Some social scientists have
questioned whether there really is a ‘crisis in confidence’
and suggest that there is a range of public views on the use
of different types of tissue. In the context of cancer bio-
banking, the interest in controlling what is done with the
tissue might be less important than the potential ‘pay-off’
from therapeutic research conducted using that tissue
(Sebire and Dixon-Woods, 2007). Moreover, the focus on
property and property rights detracts from the point that
much research using human tissue is conducted in charit-
able, academic and clinical settings and is not driven by
commercial interests.
Beyond the focus on property rights, others have dis-
cussed models of benefit-sharing and ways of negotiating
public and private interests in biobanks, such as the idea
that biobanks should be organized as ‘charitable trusts’ to
safeguard public interests by controlling the use made of
these resources by third parties (Winickoff and Winickoff,
2003). Partnership rather than property is the dominant
theme of such commentaries. Others have examined the
question of introducing systems of benefit-sharing (Berg,
2001; Simm, 2005; Wilson, 2004), including community-
based ‘benefit-sharing’ that could involve both ‘in kind’
and monetary benefits (Haddow et al., 2007). The thrust of
some of these contributions is that those running biobanks
should recognize the need for some form of reciprocation
for the free, voluntary contributions of individuals and
families to biobanks and benefit-sharing could be one way
in which this is achieved (Busby, 2006; Haddow et al., 2007;
Winickoff, 2007).

Biobanking, national identity and in/
exclusion of racial/ethnic minorities
Besides raising the kinds of ethical, legal and economic issues
discussed in the preceding sections, across the world, the
formation of biobanks often invoke or are entangled with
discourses of collective identity, community, nationhood or
ideas about racial/ethnic groups and differences. The con-
cern expressed by some anthropologists and sociologists is
that new genetic knowledge produced from population-
based genetic research could essentialize ideas of national
identity and citizenship (Arnason and Simpson, 2003). Some
researchers have considered how those promoting these
initiatives actively construct the ‘population’ of the biobank
in various ways that draw on or are congruent with legal,
social and political ideas of the nation. In some cases, this is
articulated in terms of claims about the homogeneity of the
national population, such as in Iceland where deCODE
Genetics and many of its supporters emphasized the genet-
ically isolated and homogeneous nature of the Icelandic
population (Palsson, 2008), which was reinforced by scien-
tific and popular media reports. Although such claims did
not go unchallenged (Arnason, 2003), they helped to make
the case for the Icelandic population being a ‘good popu-
lation’ for genetics research at a time when inward invest-
ment was needed (Fortun, 2008; Rose, 2001). In other
national contexts too, such as Israel and Japan, similar dis-
courses of population homogeneity have been evident,
drawing on the dominant discourses of national identity (see
Prainsack, 2008; Triendl and Gottweis, 2008).
By contrast, in countries such as the United States and
the United Kingdom, notions of diversity seem to loom
larger in discourses around prospective, population-based
biobanks. The much-discussed plans to create a national,
prospective biobank in the United States takes place in a
context in which there is specific legislation to redress
under-representation or exclusion of women and minor-
ities in biomedical research, emphasizing potential differ-
ences among such groups (see Epstein, 2007). In the United
Kingdom, it has been argued that UK Biobank has
invoked an ‘imagined national community’ united around
certain touchstones of British national identity, such as the
National Health Service, as well as drawing on more con-
temporary discourses of innovation, global competitive-
ness and multiculturalism (Busby and Martin, 2006).
The inclusion of different racial/ethnic groups in the cre-
ation, design and rationale of biobanks raises a number of
problems. Empirical studies of the scientific and social issues
of including minority racial/ethnic groups in biobanks
highlight the potential conflict that can arise between the
objectives of ‘social inclusivity’ and ‘analytical acuity’ (see
Smart et al., 2008). Although researchers might wish to
include minority groups in the studies, there are concerns
that doing so could adversely affect the quality of their sci-
ence. This is related to concerns that it will not be possible to
include minority population groups in sufficient numbers in
order for studies to be suitably ‘powered’ to draw reliable
conclusions. This issue has been hotly debated in the
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Biobanking: Social, Political and Ethical Aspects
scientific literature, with different approaches being advo-
cated for dealing with it (see Collins, 2004). One response is
for biobanks to be designed to specifically research and
address the health needs of defined populations, such as the
Translational Genomic Research in the African Diaspora
Biobank that was set up at the National Human Genome
Center at Howard University in 2003 (Royal and Dunston,
2004). The UK Biobank, by contrast, has set minimum
targets for the recruitment of individuals from a number of
specified minority racial/ethnic groups (Tutton, 2008).
Although it is hoped that the inclusion of minorities in
biobanks will help identity and redress health inequalities, it
is also recognized that research on disease susceptibility
could highlight different risk profiles for such groups and
reinforce stereotypes, leading to stigmatization or further
discrimination (Chadwick, 2003).
Summary
For ethicists, lawyers, social scientists and others, bio-
banking is a significant sociotechnical activity in the field of
biomedical research that raises a wide range of issues
relating to the formal conditions and procedures by which
individuals are recruited to these initiatives; how biobanks
establish their social and political legitimacy through novel
governance structures; how public and private interests are
negotiated by biobanks in a context of great commercial
interest in human tissue and personal clinical data and how
biobanks reflect cultural and political discourses of
national identity and might serve to address the health
needs of different groups in society.
In the past five years, there have been a number of new
initiatives to set standards for biobanking at an inter-
national level and to foster greater coordination and
cooperation among different biobanks. Organizations
such as the P3G (Public Population Project in Genomics)
Consortium in Quebec, Canada has been a notable actor,
and the European Commission under the aegis of its
Framework Programme Seven has supported initiatives at
the European level to coordinate the work of biobanks in
member and associate member states. There is an emergent
global biobanking community of scientists, technicians,
ethicists, lawyers and others engaged in a project of har-
monizing scientific, technical and ethical practices and
encouraging greater data-sharing across national borders.
As these initiatives progress, they will raise further social,
ethical and legal issues (Knoppers, 2005). Moreover, as
many existing biobanks move from the banking to the
research phase, opening their resources for researchers to
access and use, it is clear that many of the issues outlined in
this article will remain pertinent for the foreseeable future.
References
Abbott A (2001) Hopes of biotech interest spur Latvian popu-
lation genetics. Nature 412(6846): 468.
5
 Biobanking: Social, Political and Ethical Aspects
Andrews L and Nelkin D (2002) Body Bazaar: The Market for
Human Tissue in the Biotechnology Age. New York: Crown
Publications.
Arnason A and Simpson B (2003) Refractions through culture:
the new genomics in Iceland. Ethnos 68(4): 533–553.
Arnason E (2003) Genetic heterogeneity of Icelanders. Annals of
Human Genetics 67: 5–16.
Arnason G, Nordal S and Arnason V (eds) (2004) Blood and Data:
Ethical, Legal and Social Aspects of Human Genetic Databases.
Reykjavı́k: Haskolautgafan.
Berg K (2001) DNA sampling and banking in clinical genetics and
genetic research. New Genetics and Society 20(1): 59–68.
Beskow LM, Burke W, Merz J et al. (2001) Informed consent for
population-based research involving genetics. Journal of the
American Medical Association 286(18): 2315–2321.
Boyle J (1992) A theory of law and information: copyright,
spleens, Blackmail and insider trading. California Law Review
80(6): 1415–1540.
Brown N and Kraft A (2006) Blood ties: banking the stem cell
promise. Technology Analysis & Strategic Management 18(3):
313–327.
Busby H (2006) Biobanks, bioethics and concepts of donated
blood. Sociology of Health and Illness 28(6): 850–865.
Busby H and Martin P (2006) Biobanks, national identity and
imagined communities: the case of UK Biobank. Science as
Culture 15(3): 237–251.
Chadwick R (2003) Genomics, public health and identity. Acta
Bioethica 9(2): 209–218.
Chadwick R and Berg K (2001) Solidarity and equity: new ethical
frameworks for genetic databases. Nature Reviews. Genetics 2:
318–321.
Chen DT, Rosenstein DL, Muthappan P et al. (2005) Research
with stored biological samples: what do research participants
want? Archives of Internal Medicine 165(6): 652–655.
Clayton EW (2005) Informed consent and biobanks. Journal of
Law, Medicine and Ethics 33(1): 15–21.
Collins F (2004) The case for a US prospective cohort study of
genes and environment. Nature 429: 475–477.
Cooper M (2008) Life as Surplus: Biotechnology and Capitalism in
the Neoliberal Era. Seattle: University of Washington Press.
Corrigan O and Tutton R (2009) Biobanks and the challenges of
governance, legitimacy and benefit. In: Atkinson P, Glasner P
and Lock M (eds) Handbook of Genetics & Society: Mapping the
New Genomic Era, pp. 302–317. London: Routledge.
Dabrock P, Taupitz J and Ried J (ed.) (2010) Trust in Biobanking:
Dealing with Ethical, Legal and Social Issues in an Emerging
Field of Biotechnology. London: Springer.
Dixon-Woods M, Wilson D, Jackson C, Cavers D and Pritchard-
Jones K (2008) Human tissue and ‘the public’: the case of
childhood cancer tumour banking. BioSocieties 3(01): 57–80.
Elger BS and Caplan AL (2006) Consent and anonymization in
research involving biobanks. EMBO Reports 7(7): 661–666.
Epstein S (2007) Inclusion: The Politics of Difference in Medical
Research. Chicago: Chicago University Press.
Eriksson S and Hansson MG (eds) (2001) The Use of Human
Biobanks – Ethical, Social, Economical and Legal Aspects.
Uppsala, Sweden: Uppsala University Press.
Faulkner-Sleebom M (2008) Human Genetic Biobanks in Asia:
Politics of Trust and Scientific Advancement. London:
Routledge.
6 ENCYCLOPEDIA OF LIFE SCIENCES & 2010, John Wiley & Sons, Ltd. www.els.net
Fortun M (2008) Promising Genomics: Iceland and deCODE
Genetics in a World of Speculation. Berkeley: University of
California Press.
Gibbons SM, Kaye J, Smart A, Heeney C and Parker M (2007)
Governing genetic databases: challenges facing research regu-
lation and practice. Journal of Law and Society 24(2): 163–189.
Godard B, Marshall J, Laberge C and Knoppers BM (2004)
Strategies for consulting with the community: the cases of four
large scale genetic databases. Science and Engineering Ethics
10(3): 457–478.
Gottweis H and Petersen A (eds) (2008) Biobanks: Governance in
Comparative Perspective. London: Routledge.
Grubb A (1998) ‘‘I, me, mine’’: bodies, parts and property.
Medical Law International 3(299): 317.
Haddow G, Laurie G, Cunningham-Burley S and Hunter Kath-
ryn G (2007) Tackling community concerns about com-
mercialisation and genetic research: a modest interdisciplinary
proposal. Social Science & Medicine 64(2): 272–282.
Häyry M, Chadwick R, Árnason V and Árnason G (eds) (2007)
The Ethics and Governance of Human Genetic Databases:
European Perspectives. Cambridge, NY: University of Cam-
bridge Press.
Hoeyer K (2008) The ethics of research biobanking: a critical
review of the literature. Biotechnology and Genetic Engineering
Ethics 25: 429–452.
Holmlund G, Lodestad I, Nilsson H and Lindblom B (2006)
Experiences from DNA analysis in Sweden for the identification
of tsunami victims. International Congress Series 1288: 744–
746.
Knoppers BM (2005) Biobanking: international norms. Journal of
Law, Medicine and Ethics 33(1): 7–14.
Knoppers BM and Laberge C (1995) Research and stored tissue:
persons as sources, samples as persons? JAMA 274(22):
1806–1807.
Laurie G (2002) Genetic Privacy: A Challenge to Medico-Legal
Norms. Cambridge, NY: Cambridge University Press.
Lipworth W, Ankeny R and Kerridge I (2006) Consent in crisis:
the need to reconceptualise consent to tissue banking research.
Internal Medicine Journal 36: 124–128.
Lunshof J, Chadwick R, Vorhaus D and Church G (2008) From
genetic privacy to open consent. Nature Reviews. Genetics 9:
406–411.
Martin P (2001) Genetic governance: the risks, oversight and
regulation of genetic databases in the UK. New Genetics and
Society 20(2): 157–184.
McNamara B and Petersen A (2008) Framing consent: the politics
of ‘‘engagement’’ in an Australian biobank project. In: Gott-
weis H and Peterson A (eds) Biobanks: Governance in Com-
parative Perspective. London: Routledge.
Merz J, McGee GE and Sankar P (2004) ‘Iceland Inc’? On the
ethics of commercial population genetics. Social Science and
Medicine 58(6): 1201–1209.
Mieszkowski K (2003) Economic success is in the genes. Guardian.
London.
Nuffield Council on Bioethics (1995) Human Tissue: Ethical and
Legal Issues. London: Nuffield Council on Bioethics.
Palsson G (2008) Anthropology and the New Genetics. Cambridge,
NY: Cambridge University Press.
Petersen A (2006) Securing our genetic health: engendering trust
in UK Biobank. Sociology of Health and Illness 27(2): 271–292.

Petersen A (2007) ‘Biobanks’ ‘‘engagements’’: engendering trust
or engineering consent? Genomics, Society and Policy 3(1):
31–43.
Prainsack B (2008) Governing through biobanks: research
populations in Israel. In: Gottweis H and Peterson A (eds)
Biobanks: Governance in Comparative Perspective. London:
Routledge.
Rose H (2001) The Commodification of Bioinformation: The Ice-
landic Health Sector Database. London: Wellcome Trust.
Rose H (2006) From hype to mothballs in four years: troubles in
the development of large-scale DNA biobanks in Europe.
Community Genetics 9(3): 184–189.
Royal CDM and Dunston GM (2004) Changing the paradigm
from ‘race’ to human genome variation. Nature Genetics
36(suppl. 11): S5–S7.
Salter B and Jones M (2005) Biobanks and bioethics: the politics
of legimitation. European Journal of Public Policy 12(2):
710–732.
Sebire NJ and Dixon-Woods M (2007) Towards a new era of
tissue-based diagnosis and research. Chronic Illness 3(4)
(December 1) 301–309.
Shickle D (2006) The consent problem within DNA biobanks.
Studies in History and Philosophy of Biology and Biomedical
Sciences 37: 503–519.
Shickle D, Hapgood R, McCabe C and Shackley P (2002) ‘Public
attitudes to participating in BioBank UK: A DNA bank, life-
style and morbidity database of 500 000 members of the UK
public aged 45-65’. Paper presented at 3rd International DNA
Sampling Conference, Montreal, Quebec, Canada.
Simm K (2005) Benefit-sharing: an inquiry regarding the meaning
and limits of the concept in human genetic research. Genomics,
Society and Policy 1(2): 29–40.
ENCYCLOPEDIA OF LIFE SCIENCES & 2010, John Wiley & Sons, Ltd. www.els.net
Biobanking: Social, Political and Ethical Aspects
Smart A, Tutton R, Ashcroft R et al. (2008) Social inclusivity
versus analytical acuity? A qualitative study of UK researchers
regarding the inclusion of minority racial/ethnic groups in
biobanks. Medical Law International 9(2): 169–190.
Triendl R and Gottweis H (2008) Governance by stealth: large-
scale pharmacogenomics and biobanking in Japan. In: Gott-
weis H and Peterson A (eds) Biobanks: Governance in Com-
parative Perspective. London: Routledge.
Tupasela A (2006) Locating tissue collections in tissue economies
– deriving value from biomedical research. New Genetics and
Society 25(1): 33–49.
Tutton R (2008) Biobanks and the biopolitics of inclusion and
representation. In: Gottweis H and Peterson A (eds) Biobanks:
Governance in Comparative Perspective, pp. 159–176. London:
Routledge.
Tutton R and Corrigan O (eds) (2004) Genetic Databases: Socio-
ethical Issues in the Collection and Use of DNA. London:
Routledge.
Waldby S and Mitchell R (2006) Tissue Economies: Blood, Organs
and Cell Lines in Late Capitalism. London: Duke University
Press.
Walmsley H (2009) Mad scientists bend the frame of biobank
governance in British Columbia. Journal of Public Deliberation
5(1): 1–26.
Wilson S (2004) Population biobanks and social justice: com-
mercial or communitarian models? Trames 8(1/2): 80–89.
Winickoff DE (2007) Partnership in UK Biobank: a third way for
genomic property. Journal of Law, Medicine and Ethics 35(3):
440–445.
Winickoff DE and Winickoff RN (2003) The charitable trust as a
model for genomic biobanks. New England Journal of Medicine
349(12): 1180–1184, September 18.
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