What Research Ethics Should Learn from Genomics and Society Research: Lessons from the ELSI Congress of 2011

Journal of Law, Medicine and Ethics 40 (4):1008-1024 (2012)


In much the same way that genomic technologies are changing the complexion of biomedical research, the issues they generate are changing the agenda of IRBs and research ethics. Many of the biggest challenges facing traditional research ethics today — privacy and confidentiality of research subjects; ownership, control, and sharing of research data; return of results and incidental findings; the relevance of group interests and harms; the scope of informed consent; and the relative importance of the therapeutic misconception — have become important policy issues over the last 20 years because of the ways they have been magnified by genomic research efforts. Research that examines the ethical, legal, and social implications of human genomics research has become a burgeoning international field of scholarship over the last 20 years, thanks in part to its support first by the genome research funding bodies in the U.S. and then by national science agencies in other countries.

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The Challenge of Incidental Findings.Susan M. Wolf - 2008 - Journal of Law, Medicine and Ethics 36 (2):216-218.

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