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Bioethics and large-scale biobanking: individualistic ethics and collective projects

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Bioethics and large-scale biobanking: individualistic ethics and collective projects. / Williams, Garrath.
In: Life Sciences, Society and Policy, Vol. 1, No. 2, 08.2005, p. 50-66.

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Williams G. Bioethics and large-scale biobanking: individualistic ethics and collective projects. Life Sciences, Society and Policy. 2005 Aug;1(2):50-66. doi: 10.1186/1746-5354-1-2-50

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Williams, Garrath. / Bioethics and large-scale biobanking : individualistic ethics and collective projects. In: Life Sciences, Society and Policy. 2005 ; Vol. 1, No. 2. pp. 50-66.

Bibtex

@article{c2ffcbd0df0e47458aa880972987968c,
title = "Bioethics and large-scale biobanking: individualistic ethics and collective projects",
abstract = "Like most bioethical discussion, examination of human biobanks has been largely framed in terms of research subjects' rights, principally informed consent, with some gestures toward public benefits. However, informed consent is for the competent, rights-bearing individual: focussing on the individual, it thus neglects social, economic and even political matters; focussing on the competent rights-bearer, it does not serve situations where consent is plainly inappropriate (eg, the young child) or where coercion can obviously be justified (the criminal). Using the British experience of large-scale biobanking, I argue that the focus on consenting individuals distorts our ways of thinking about biobanks and has serious practical ramifications. This becomes clear if we contrast the case of adult biobanks intended for medical research with two other forms of biobanking. Thus child cohort studies - vital for sound scientific investigation of the interplay of genetics and environment in health - have been very badly funded next to adult studies. On the other hand, forensic databases have attracted massive investment, but little debate - partly owing to a sense that here, at least, is a case where consent is not relevant. Contrasting these central types of biobanking, I will suggest that there are powerful factors at work in limiting 'ethics' to individual rights. Projects of this size should direct our attention to more overtly political questions concerning priority setting and organisation of medical research.",
keywords = "Research ethics, informed consent, confidentiality, biobanks, genetic banking, genetic databases, forensic databases, priority-setting in health care research",
author = "Garrath Williams",
year = "2005",
month = aug,
doi = "10.1186/1746-5354-1-2-50",
language = "English",
volume = "1",
pages = "50--66",
journal = "Life Sciences, Society and Policy",
issn = "2195-7819",
publisher = "Springer International Publishing AG",
number = "2",

}

RIS

TY - JOUR

T1 - Bioethics and large-scale biobanking

T2 - individualistic ethics and collective projects

AU - Williams, Garrath

PY - 2005/8

Y1 - 2005/8

N2 - Like most bioethical discussion, examination of human biobanks has been largely framed in terms of research subjects' rights, principally informed consent, with some gestures toward public benefits. However, informed consent is for the competent, rights-bearing individual: focussing on the individual, it thus neglects social, economic and even political matters; focussing on the competent rights-bearer, it does not serve situations where consent is plainly inappropriate (eg, the young child) or where coercion can obviously be justified (the criminal). Using the British experience of large-scale biobanking, I argue that the focus on consenting individuals distorts our ways of thinking about biobanks and has serious practical ramifications. This becomes clear if we contrast the case of adult biobanks intended for medical research with two other forms of biobanking. Thus child cohort studies - vital for sound scientific investigation of the interplay of genetics and environment in health - have been very badly funded next to adult studies. On the other hand, forensic databases have attracted massive investment, but little debate - partly owing to a sense that here, at least, is a case where consent is not relevant. Contrasting these central types of biobanking, I will suggest that there are powerful factors at work in limiting 'ethics' to individual rights. Projects of this size should direct our attention to more overtly political questions concerning priority setting and organisation of medical research.

AB - Like most bioethical discussion, examination of human biobanks has been largely framed in terms of research subjects' rights, principally informed consent, with some gestures toward public benefits. However, informed consent is for the competent, rights-bearing individual: focussing on the individual, it thus neglects social, economic and even political matters; focussing on the competent rights-bearer, it does not serve situations where consent is plainly inappropriate (eg, the young child) or where coercion can obviously be justified (the criminal). Using the British experience of large-scale biobanking, I argue that the focus on consenting individuals distorts our ways of thinking about biobanks and has serious practical ramifications. This becomes clear if we contrast the case of adult biobanks intended for medical research with two other forms of biobanking. Thus child cohort studies - vital for sound scientific investigation of the interplay of genetics and environment in health - have been very badly funded next to adult studies. On the other hand, forensic databases have attracted massive investment, but little debate - partly owing to a sense that here, at least, is a case where consent is not relevant. Contrasting these central types of biobanking, I will suggest that there are powerful factors at work in limiting 'ethics' to individual rights. Projects of this size should direct our attention to more overtly political questions concerning priority setting and organisation of medical research.

KW - Research ethics

KW - informed consent

KW - confidentiality

KW - biobanks

KW - genetic banking

KW - genetic databases

KW - forensic databases

KW - priority-setting in health care research

U2 - 10.1186/1746-5354-1-2-50

DO - 10.1186/1746-5354-1-2-50

M3 - Journal article

VL - 1

SP - 50

EP - 66

JO - Life Sciences, Society and Policy

JF - Life Sciences, Society and Policy

SN - 2195-7819

IS - 2

ER -