Postmortem disclosure of genetic information to family members: active or passive?

被引:21
|
作者
Boers, Sarah N. [1 ]
van Delden, Johannes J. M. [1 ]
Knoers, Nine V. [2 ]
Bredenoord, Annelien L. [1 ]
机构
[1] Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Dept Med Humanities, NL-3508 GA Utrecht, Netherlands
[2] Univ Med Ctr Utrecht, Dept Med Genet, NL-3508 GA Utrecht, Netherlands
关键词
ethics; postmortem disclosure; genetic information; next-generation sequencing; family members; DECEASED RESEARCH PARTICIPANTS; AT-RISK RELATIVES; WHOLE-GENOME; CLINICAL-PRACTICE; CHALLENGES; DUTY; RETURN; LEGAL; COMMUNICATION; MEDICINE;
D O I
10.1016/j.molmed.2015.01.002
中图分类号
Q5 [生物化学]; Q7 [分子生物学];
学科分类号
071010 ; 081704 ;
摘要
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. © 2015 Elsevier Ltd.
引用
收藏
页码:148 / 153
页数:6
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