UZH-Logo

Maintenance Infos

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.

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.

Citations

21 citations in Web of Science®
24 citations in Scopus®
Google Scholar™

Downloads

149 downloads since deposited on 29 Jun 2009
27 downloads since 12 months
Detailed statistics

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
Language:English
Date:June 2009
Deposited On:29 Jun 2009 12:13
Last Modified:05 Apr 2016 13:17
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
Permanent URL: https://doi.org/10.5167/uzh-19488

Download

[img]
Preview
Filetype: PDF
Size: 1MB

TrendTerms

TrendTerms displays relevant terms of the abstract of this publication and related documents on a map. The terms and their relations were extracted from ZORA using word statistics. Their timelines are taken from ZORA as well. The bubble size of a term is proportional to the number of documents where the term occurs. Red, orange, yellow and green colors are used for terms that occur in the current document; red indicates high interlinkedness of a term with other terms, orange, yellow and green decreasing interlinkedness. Blue is used for terms that have a relation with the terms in this document, but occur in other documents.
You can navigate and zoom the map. Mouse-hovering a term displays its timeline, clicking it yields the associated documents.

Author Collaborations