Biobanks include biological samples and attached databases. Human biobanks occur in research, technological development and medical activities. Population genomics is highly dependent on the availability of large biobanks. Ethical issues must be considered: protecting the rights of those people whose samples or data are in biobanks (information, autonomy, confidentiality, protection of private life), assuring the non-commercial use of human body elements and the optimal use of samples and data. They balance other issues, such as protecting the rights of researchers and companies, allowing long-term use of biobanks while detailed information on future uses is not available. At the level of populations, the traditional form of informed consent is challenged. Other dimensions relate to the rights of a group as such, in addition to individual rights. Conditions of return of results and/or benefit to a population need to be defined. With ‘large-scale biobanking’ a marked trend in genomics, new societal dimensions appear, regarding communication, debate, regulation, societal control and valorization of such large biobanks. Exploring how genomics can help health sector biobanks to become more rationally constituted and exploited is an interesting perspective. For example, evaluating how genomic approaches can help in optimizing haematopoietic stem cell donor registries using new markers and high-throughput techniques to increase immunogenetic variability in such registries is a challenge currently being addressed. Ethical issues in such contexts are important, as not only individual decisions or projects are concerned, but also national policies in the international arena and organization of democratic debate about science, medicine and society.
This paper questions the participants' viewpoint in a research in genetic epidemiology on the collection procedure of their consent. Stemming from a qualitative sociological approach through ethnographic observations and interviews (n ¼ 35), it aims at understanding the actual experience of the procedure. Through collected speeches, it emphasizes the existence of contrasted appreciations of the signature procedure of the consent (from positive reactions to attitudes of mistrust). This article identifies the manner in which these appreciations are built. It suggests that the taking into account of these different appreciations and their logics may benefit a co-construction of plans for the constitution of a 'DNA bank' in population. Finally, some modalities are proposed briefly in the conclusion.
This chapter addresses one so-called ethical aspect of biobanking, namely the relationship between biobanks for research and donors of human biological samples and personal health information. Central to bioethical theory and practice is the institution of informed consent and its potential to create trust. We present results from an observational study of the consent process during the recruitment to a local population DNA bank in Southern France as well as subsequent interviews with donors. Three types of donors were identified: (1) Persons holding a "natural trust" and who were quite uninterested in the information and consent procedure; (2) persons who expressed distrust, but nevertheless participated as donors; and (3) persons who appreciated the consent procedure as a sign of a well-organised institution. While informed consent may appear partly irrelevant to the issue of trust for a large group of donors, we proceed to discuss the status and desirability of a strong focus on donors' trust in biobank experts. Indeed, more symmetry and distrust may be a creative potential in the co-production of science and society in the biobank era.
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