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Title: Population biobanks and returning individual research results: mission impossible or new directions?
Authors: Wallace, Susan E.
Kent, Alastair
First Published: 5-Jun-2011
Publisher: Springer Verlag
Citation: Human Genetics, 2011, 130 (3), pp. 393-401
Abstract: Historically, large-scale longitudinal genomic research studies have not returned individual research results to their participants, as these studies are not intended to find clinically significant information for individuals, but to produce 'generalisable' knowledge for future research. However, this stance is now changing. Commentators now argue that there is an ethical imperative to return clinically significant results and individuals are now expressing a desire to have them. This shift reflects societal changes, such as the rise of social networking and an increased desire to participate in medical decision-making, as well as a greater awareness of genetic information and the increasing ability of clinicians to use this information in health care treatment. This paper will discuss the changes that have prompted genomic research studies to reconsider their position and presents examples of projects that are actively engaged in returning individual research results.
DOI Link: 10.1007/s00439-011-1021-x
ISSN: 0340-6717
eISSN: 1432-1203
Version: Post-print
Status: Peer-reviewed
Type: Journal Article
Rights: Copyright © Springer-Verlag 2011. Deposited with reference to the publisher's archiving policy available on the SHERPA/RoMEO website.
Appears in Collections:Published Articles, Dept. of Health Sciences

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