Postmortem disclosure of genetic information to family members: Active or passive?
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Publication date
2015-03
Authors
Boers, Sarah N
van Delden, Johannes J M
Knoers, N. V A M
Bredenoord, Annelien L.
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Document Type
Article
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taverne
Abstract
Advances in next-generation DNA sequencing (NGS) now make it possible, and affordable, to sequence the entire genome of an individual. Routine clinical application is on the horizon. There is a consensus that some subsets of genetic information should be disclosed to patients, but disclosure to their relatives is less consensual. This issue becomes especially salient after a patient's death, when permission can no longer be sought. There has however been little debate on postmortem disclosure. We identify and explain the arguments in favor of and against disclosure of genetic information to the relatives of a deceased patient. We conclude that there are valid reasons to communicate some subsets of genetic information to family members after death, and we propose a passive postmortem disclosure policy.
Keywords
Ethics, Family members, Genetic information, Next-generation sequencing, Postmortem disclosure, DECEASED RESEARCH PARTICIPANTS, AT-RISK RELATIVES, WHOLE-GENOME, CLINICAL-PRACTICE, CHALLENGES, DUTY, RETURN, LEGAL, WARN, COMMUNICATION, Taverne, Molecular Biology, Molecular Medicine, Journal Article, Review
Citation
Boers, S N, van Delden, J J M, Knoers, N V & Bredenoord, A L 2015, 'Postmortem disclosure of genetic information to family members : Active or passive?', Trends in molecular medicine, vol. 21, no. 3, pp. 148-153. https://doi.org/10.1016/j.molmed.2015.01.002