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Return of Results: Towards a Lexicon?

Published online by Cambridge University Press:  01 January 2021

Bartha Maria Knoppers  and
Amy Dam
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Extract

The last few years have witnessed the growth of large-scale, population genomics biobanks, which serve as longitudinal, gene-environment databases for future yet unspecified research. An international consortium, the Public Population Project in Genomics (P3G), builds harmonization tools for such biobanks and has catalogued numerous studies — at least 139 with over 10,000 banked participants and 34 with over 100,000. As their potential use for translational, clinical research draws near, it is opportune to clarify the duties of such biobanks to communicate results to participants. To identify the potential obligations, some demystification of the terminology surrounding the return of results as found in international and national norms on biobanking generally is essential. On the whole, our proposed lexicon is based on a study of norms as found in national and international policies but excludes debates found in the literature.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 39 , Issue 4 , Winter 2011 , pp. 577 - 582
Copyright
Copyright © American Society of Law, Medicine and Ethics 2011

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