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International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access

Published online by Cambridge University Press:  01 January 2021

Rebecca Branum  and
Susan M. Wolf
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Extract

Debate over return of results and incidental findings to participants in genetic and genomic research has exploded over the last decade. At this point, there is wide agreement that investigators have a responsibility to anticipate discovery of findings that may warrant return, to incorporate in protocols a plan for evaluating such findings, and to offer at least some of these results to participants consenting to such return. However, the issue of how to handle questions from a participant’s genetic relatives about their own risk, or whether investigators should alert relatives to a genetic risk they may share, has garnered much less attention. Only recently has the genomic research community begun to debate these questions and offer recommendations.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 43 , Issue 3 , Autumn 2015 , pp. 576 - 593
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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