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Ethical norms and the international governance of genetic databases and biobanks: findings from an international study


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.

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.

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.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:01 Faculty of Theology > Center for Ethics
04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
Dewey Decimal Classification:170 Ethics
610 Medicine & health
Scopus Subject Areas:Health Sciences > Issues, Ethics and Legal Aspects
Social Sciences & Humanities > Health (social science)
Health Sciences > Health Policy
Social Sciences & Humanities > History and Philosophy of Science
Language:English
Date:June 2009
Deposited On:29 Jun 2009 12:13
Last Modified:29 Jul 2020 19:13
Publisher:Johns Hopkins University Press
ISSN:1054-6863
OA Status:Green
Free access at:Publisher DOI. An embargo period may apply.
Publisher DOI:https://doi.org/10.1353/ken.0.0278
Official URL:http://muse.jhu.edu/journals/kennedy_institute_of_ethics_journal/v019/19.2.capron.pdf
PubMed ID:19623818

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