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Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death

Published online by Cambridge University Press:  01 January 2021

Laura M. Amendola ,
Martha Horike-Pyne ,
Susan B. Trinidad ,
Stephanie M. Fullerton ,
Barbara J. Evans ,
Wylie Burke  and
Gail P. Jarvik
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Extract

The incorporation of exome and genome sequencing into research and clinical practice raises the possibility of providing a range of genomic results to relatives in the event of the death of the research participant or patient. Genomic data can be of direct relevance to the medical care of relatives. However, some test subjects (e.g., cancer patients) are at higher risk of dying before they receive their test results and thus may not be able to share useful information with family members. We created an Institutional Review Board (IRB)-approved document with talking points on the possibility of disclosure of results to family members after an individual’s death to discuss during the informed consent process for genomic testing with participants in a study of exome sequencing in the context of familial colorectal cancer/polyposis.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 43 , Issue 3 , Autumn 2015 , pp. 476 - 485
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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