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Permanent URL to this publication: http://dx.doi.org/10.5167/uzh-19488

Capron, A M; Mauron, A; Elger, B S; Boggio, A; Ganguli-Mitra, A; Biller-Andorno, N (2009). Ethical norms and the international governance of genetic databases and biobanks: findings from an international study. Kennedy Institute of Ethics Journal, 19(2):101-124.

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Abstract

This article highlights major results of a study into the ethical norms and rules governing biobanks. After describing the methodology, the findings regarding four topics are presented: (1) the ownership of human biological samples held in biobanks; (2) the regulation of researchers’ use of samples obtained from biobanks; (3) what constitutes “collective consent” to genetic research, and when it is needed; and (4) benefit sharing and remuneration of research participants. The paper then summarizes key lessons to be drawn from the findings and concludes by reflecting on the importance of such empirical research to inform future governance norms and practices.

Item Type:Journal Article, refereed, original work
Communities & Collections:01 Faculty of Theology > Center for Ethics
04 Faculty of Medicine > Institute of Biomedical Ethics
DDC:170 Ethics
610 Medicine & health
Language:English
Date:June 2009
Deposited On:29 Jun 2009 12:13
Last Modified:27 Nov 2013 16:24
Publisher:Johns Hopkins University Press
ISSN:1054-6863
Official URL:http://muse.jhu.edu/journals/kennedy_institute_of_ethics_journal/v019/19.2.capron.pdf
Citations:Web of Science®. Times Cited: 15
Google Scholar™
Scopus®. Citation Count: 17

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