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Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles

Published online by Cambridge University Press:  01 January 2021

Laura M. Beskow  and
P. Pearl O'Rourke
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Extract

Whether or not to offer individual genetic results to research participants has been the subject of considerable debate, yet consensus regarding what, when, and how to return remains elusive. Despite this lack of clarity, the discussion has moved to the offer of research results to family members of participants, including when the participant is deceased. Given the familial implications of genetic information, this extension is perhaps logical. But it raises concerns throughout the research process, including, for example, questions about disclosures and choices on consent forms, procedures for identifying and contacting family members, and how any such obligations might apply to secondary users of biospecimens and data.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 43 , Issue 3 , Autumn 2015 , pp. 502 - 513
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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