The Return of Results of Deceased Research Participants

Journal of Law, Medicine and Ethics 39 (4):621-630 (2011)
The death of a research participant raises numerous ethical and legal issues regarding the return of research results to related family members. This question is particularly acute in the context of genetic research since the research results from an individual may be relevant to each of the biological relatives. This paper first investigates the ethical and legal frameworks governing the return of a deceased participant's individual research results to his or her related family members. Then, it weighs the rights and interests of both the deceased individual and related family members in an attempt to identify key ethical considerations underlying the return of such results. This analysis of international guidelines and national laws and regulations reveals that though the legal framework regarding privacy and confidentiality of clinical and research information is well established (albeit not homogenous), guidelines are generally absent in the post-mortem context. Nevertheless, a brief analysis of this issue through two ethical perspectives (principlism and consequentialism) allows us to identify six key elements to be taken into consideration when returning a deceased participant's research results
Keywords No keywords specified (fix it)
Categories (categorize this paper)
 Save to my reading list
Follow the author(s)
My bibliography
Export citation
Find it on Scholar
Edit this record
Mark as duplicate
Revision history Request removal from index
Download options
PhilPapers Archive

Upload a copy of this paper     Check publisher's policy on self-archival     Papers currently archived: 9,360
External links
  • Through your library Configure
    References found in this work BETA
    Citations of this work BETA
    Similar books and articles
    Bartha Maria Knoppers & Amy Dam (2011). Return of Results: Towards a Lexicon? Journal of Law, Medicine and Ethics 39 (4):577-582.

    Monthly downloads

    Added to index


    Total downloads

    4 ( #198,580 of 1,088,854 )

    Recent downloads (6 months)

    1 ( #69,662 of 1,088,854 )

    How can I increase my downloads?

    My notes
    Sign in to use this feature

    Start a new thread
    There  are no threads in this forum
    Nothing in this forum yet.