12,000

We have over 12,000 students, from over 100 countries, within one of the safest campuses in the UK

93%

93% of Lancaster students go into work or further study within six months of graduating

Home > Research > Publications & Outputs > Bioethics and large-scale biobanking: individua...
View graph of relations

« Back

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

Research output: Contribution to journalJournal article

Published

Journal publication date08/2005
JournalGenomics, Society and Policy
Journal number2
Volume1
Number of pages17
Pages50-66
Original languageEnglish

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.