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Ethical norms and the international governance of genetic databases and biobanks: findings from an international study
JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift)
 
ID 1002522
Author(s) Capron, Alexander Morgan; Mauron, Alexandre; Elger, Bernice Simone; Boggio, Andrea; Ganguli-Mitra, Agomoni; Biller-Andorno, Nikola
Author(s) at UniBasel Elger, Bernice Simone
Year 2009
Title Ethical norms and the international governance of genetic databases and biobanks: findings from an international study
Journal Kennedy Institute of Ethics Journal
Volume 19
Number 2
Pages / Article-Number 101-24
Mesh terms Databases, Genetic, trends; Ethical Analysis; Genetic Privacy, trends; Genetic Research, ethics; Humans; Informed Consent; International Cooperation; Ownership; Tissue Banks, trends
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.
Publisher Johns Hopkins University Press
ISSN/ISBN 1054-6863 ; 1086-3249
edoc-URL https://edoc.unibas.ch/74832/
Full Text on edoc No
Digital Object Identifier DOI 10.1353/ken.0.0278
PubMed ID http://www.ncbi.nlm.nih.gov/pubmed/19623818
ISI-Number WOS:000267475000001
Document type (ISI) Journal Article
 
   

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