Postmortem disclosure of genetic information to family members: active or passive?
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.
Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Str 6.131, PO Box 85500, 3508 GA Utrecht, The Netherlands. Electronic address: s.n.boers@umcutrecht.nl.
Sarah N
SN
Boers
Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Str 6.131, PO Box 85500, 3508 GA Utrecht, The Netherlands.
Johannes J M
JJ
van Delden
Department of Medical Genetics, University Medical Center Utrecht, KC04.084.2, PO Box 85090, 3508 GA Utrecht, The Netherlands.
Nine V
NV
Knoers
Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Str 6.131, PO Box 85500, 3508 GA Utrecht, The Netherlands.
Annelien L
AL
Bredenoord
D030881:Disclosure; D005190:Family; D030661:Genetic Privacy; D006801:Humans; D011180:Postmortem Changes
ethics; family members; genetic information; next-generation sequencing; postmortem disclosure