Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.

ABSTRACT: The majority of biobank policies and consent forms do not address post-mortem use of data for medical research, thus causing uncertainty after research participants' death. This systematic review identifies studies examining stakeholders' perspectives on this issue. We conducted a search in MEDLINE, CINAHL, EMBASE and Web of Science. Findings were categorised in two themes: (1) views on the use of data for medical research after participants' death, and (2) perspectives regarding the post-mortem return of individual genetic research results. An important subtheme was the appropriate authority and degree of control over posthumous use of data. The sixteen included studies all focused on genetic data and used quantitative and qualitative methods to survey perspectives of research participant

SUBMITTER: Bak MAR 

PROVIDER: S-EPMC7080773 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature