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

Sarah N Boers, Johannes J M van Delden, Nine V Knoers, Annelien L Bredenoord

    Research output: Contribution to journalReview articlepeer-review

    17 Citations (Scopus)

    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.

    Original languageEnglish
    Pages (from-to)148-153
    Number of pages6
    JournalTRENDS IN MOLECULAR MEDICINE
    Volume21
    Issue number3
    DOIs
    Publication statusPublished - 2015

    Keywords

    • Disclosure
    • Family
    • Genetic Privacy
    • Humans
    • Postmortem Changes

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