Biobanks: governance in a comparative perspective ‐ Edited by Gottweiss, H. and Petersen, A.

Abstract

Gottweiss, H. and Petersen, A. (eds) Biobanks: governance in a comparative perspective 2008 Abingdon : Routledge , £20.99 , xi+234 pp , IBSN 10-415-42737-1 (pbk) Medical research engages with the production of visions of possible (better) futures, and with the enrolment of subjects to assist with pursuing these aspirations. In recent years, large collections of genetic and linked data have been a prominent vehicle through which such research has been organised. Drawing on concepts developed by Rabinow and Dan Cohen in their work on the biotech industry, the editors describe these biobanking projects as improvisatory ‘machines’ orientated to making futures. It is a decade since the Icelandic parliament put in place legislation to allow for the launch of a national Health Sector Database and an associated collection of samples and genetic information. In so doing so, it launched an international debate on the ethical issues associated with such large collections of data and human samples, especially around commercial involvement in such projects. This book presents a series of case studies through which thinking about governance ‘of’ and ‘through’ biobanks is explored. The chapters explore the emergence of population biobanks in Iceland, Estonia, the UK, Denmark, Sweden and Norway – and the collapse of the first two in relation to the reach of their initial ambitions; the political and logistical reasons why the USA and Germany did not construct such projects at a national level; the politics of consultation around several of the biobanks; and several forms of novel tissue and data collections in Israel, Japan, and France. Social scientists have discerned important questions of identity in the construction and representation of national and regional biobanks. These are explored well in Richard Tutton's consideration of the biopolitics of inclusion and representation in the UK; Ingrid Schneider's of why a national biobank has not been felt to be a desirable policy goal in Germany, and Barbara Prainsack's study of collections of biological data from particular populations within Israel. There has more recently been a move to international collaboration in biobanks. The editors acknowledge this, but do not address the implications of such collaborations in any depth here. A strength of the book is that practices of ethics and assumptions surrounding them are effectively challenged: Ursin et al.'s chapter on the paradoxes associated with the construction of research subjects as active ‘informed consenters’ in Scandinavia is a good example. One limitation of the book is the lack of a stronger editorial definition of the object of study, the ‘biobanks’. The term as used in the current scientific literature refers primarily to large collections of genetic samples from a regional or national population, together with associated health and lifestyle data. These newer repositories of data and samples are characterised by drawing on a broader population than did the earlier genetic registries, often based in hospitals, which focussed on patients with particular diseases, their families, or those identified as especially ‘susceptible’. With the new emphasis came the need to enrol large numbers of research subjects from the ‘general population’, and the requirement for new rationales for participation. The scale of these endeavours necessitated the involvement of the state in many of the initiatives described here, alongside research communities, clinicians, and large numbers of research subjects. Complex forms of public/private organisations were constructed to host these projects, and the chapters document the ‘ups and downs’ of such experiments in organisational forms. However, the lack of distinction between such biobanks and other collections of human tissues dilutes the claim that we can talk about biobanks in terms of ‘a new strategy in the governance of life’. The territorial claims of social scientists versus ethicists are somewhat in evidence in this volume. (Perhaps the editors underplay the extent to which we have, in recent years, seen more engagement and fluidity between the disciplines of sociology and bioethics.) On the other hand, the tensions between different scientific discourses involved in the debate about genetic biobanks are less evident, so that, for example, we hear little about the interplay and contest between ‘old’ (social) epidemiologists, clinical geneticists, and new genetic epidemiologists in this context. To date, much of the work on biobanks has been published in journals – including earlier versions of several of these chapters. This book offers an interesting and accessible collection of analyses of governance at work in relation to biobanks across a range of countries.