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Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations

Published online by Cambridge University Press:  01 January 2021

Susan M. Wolf ,
Rebecca Branum ,
Barbara A. Koenig ,
Gloria M. Petersen ,
Susan A. Berry ,
Laura M. Beskow ,
Mary B. Daly ,
Conrad V. Fernandez ,
Robert C. Green  and
Bonnie S. LeRoy
...Show all authors
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Extract

The debate about how to manage individual research results and incidental findings in genetic and genomic research has focused primarily on what information, if any, to offer back to research participants. However, increasing controversy surrounds the question of whether researchers have any responsibility to offer a participant’s results (defined here to include both individual research results and incidental findings) to the participant’s relatives, including after the participant’s death. This question arises in multiple contexts, including when researchers discover a result with potentially important health implications for genetic relatives, when a participant’s relatives ask a researcher whether any research results about the participant have implications for their own health or reproductive planning, when a participant’s relative asks whether any of the participant’s results have implications for a child’s health, and when the participant is deceased and the participant’s relatives seek information about the participant’s genetic results in order to address their own health or reproductive concerns.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 43 , Issue 3 , Autumn 2015 , pp. 440 - 463
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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