Motivating donors to genetic research? Anthropological reasons to rethink the role of informed consent.

Medicine, Health Care, and Philosophy
Klaus Hoeyer, Niels Lynöe

Abstract

In this article we explore the contribution from social anthropology to the medical ethical debates about the use of informed consent in research, based on blood samples and other forms of tissue. The article springs from a project exploring donors' motivation for providing blood and healthcare data for genetic research to be executed by a Swedish start-up genomics company. This article is not confined to empirical findings, however, as we suggest that anthropology provides reason to reassess the theoretical understanding of autonomy as generally defined by Beauchamp and Childress. Careful consideration of the trust expressed by donors through the act of donation, furthermore, suggests that there is reason to redirect the ethical scrutiny from informed consent to issues concerning institutional arrangements and social responsibility. In particular, we suggest that an anthropological approach could facilitate a reconsideration of the political implications of using informed consent as a regulatory practice in tissue-based research.

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Citations

Jul 22, 2010·European Journal of Human Genetics : EJHG·Linus JohnssonMats G Hansson
May 20, 2011·Sociology of Health & Illness·Wendy LipworthIan Kerridge
Aug 5, 2011·Sociology of Health & Illness·Kathryn EhrichRosamund Scott
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Mar 10, 2015·Journal of Empirical Research on Human Research Ethics : JERHRE·Virgilia ToccaceliMaria Antonietta Stazi
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Dec 17, 2014·Biopreservation and Biobanking·Christian M SimonHelen A Schartz
Dec 19, 2021·Sociology of Health & Illness·Violeta Argudo-Portal, Miquel Domènech

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