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Edited by M G Hansson. Uppsala University, 2001, free, pp 93. ISBN 91–506–1472-X
This booklet (freely accessible online at http://www.bioethics.uu.se/biobanks-report.html) documents a public hearing organised by a Swedish research project on the various social and ethical issues raised by the use of so called biobanks—that is, large collections of human tissue samples. There is considerable interest among researchers, the biotech industry, and society at large in using biobanks for the continued investigation of genetic health factors that is now following the completed mapping of the human genome. Central issues are: the responsibility of biobanks or users of these to protect tissue donors in various ways; how these responsibilities should be balanced against business and research interests, as well as against the interests of people in general in case of conflict and, not least, what procedures of informed consent (including the hard question of the scope of the consent) should be deemed as appropriate in the biobank setting.
Although formulating these issues against the background of the actual scientific, legal, and business situation in this area, the booklet provides few answers, but outlines various studies that are to be undertaken. Because the contributions focus almost exclusively on the Swedish context (an addition of “in Sweden” to the title would not have been misplaced), this makes the relevance of this publication to a broader international audience somewhat limited. In some cases, this focus becomes so overwhelming that Swedish research ethical practice and legislation is taken for granted, without any attention being paid to differences that exist between Sweden and other parts of the West. For example, Mats G Hansson states, as a basic feature of the ethical background to biobank issues, that it would be disrespectful of researchers’ integrity if their control over collected research materials, data, and results were limited by regulation; and he claims that this can be inferred from the traditional legal right of Swedish individual researchers to have such control. This presupposes, however, that this tradition (which is hardly a given from an international perspective, where universities and funding parties are often granted much more control) should be taken as universal—a presupposition that clearly begs relevant ethical questions. The value of the booklet is further impeded by the lack of a substantial overview chapter (either at the beginning or at the end) which could have served to tie together the rather heterogeneously written pieces on scientific strategies; business interests; overarching ethical conflicts; empirical as well as normative studies of informed consent, and issues of civil as well as public law into a coherent picture of “the biobank issue”.
Those chapters of most interest from an ethical point of view deal with the basic conflict between individual integrity and social utility (Mats G Hansson); what model of informed consent is most appropriate in a biobank setting (Stefan Eriksson), and underlying cultural conceptions of the body and its parts (Jacob Dahl Rendtorff). The treatment of these areas is rather shallow, however, in several respects. For example, although the fact that a biobank may be used for many different purposes (apart from basic research, diagnosis, treatment, and securing quality of care) is noted by Hansson and Eriksson, no attempt is made to investigate to what extent different considerations, arguments, and conclusions may be more or less applicable depending on what use of biobanks is being considered. Another example is Eriksson’s somewhat longwinded account of various “models” of informed consent, which does not serve to clarify any of the underlying normative issues, such as the question of what ultimate value such a model should be taken to serve or what is more precisely meant by the notion of an “autonomous” consent. In spite of this, however, Eriksson makes several bold normative statements in the form of three principles (of which two seem to be mere logical consequences of the first one)—though, unfortunately, without any hint of supporting arguments. Hansson’s idea of two principles of integrity (one about the individual’s right to control and the other about his right to influence the policy making process) is equally lacking in underlying reflection, since he fails to note that controlling what happens to me or parts of my body may very well mean that I choose to delegate some such decisions to someone else.