Stakeholders\u2019 perspectives on the post-mortem use of genetic and health-related data for research: a systematic review

Marieke A R Bak,Marieke A R Bak,Hakan Ateşyürek,Hakan Ateşyürek,M Corrette Ploem,Hanno L Tan,Hanno L Tan,Dick L Willems,Dick L Willems,Marieke T Blom,Marieke T Blom

doi:10.1038/s41431-019-0503-5

Marieke A R Bak, Marieke A R Bak + Show 9 more

Open Access

https://doi.org/10.1038/s41431-019-0503-5

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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 participants, family members, researchers and Institutional Review Board members. Acceptability of post-mortem use of data for medical research was high among research participants and their relatives. Most stakeholders thought participants should be informed about post-mortem research uses during initial consent. Between lay persons and professionals, disagreement exists about whether relatives should receive actionable genetic findings, and whether the deceased’s previous preferences can be overridden. We conclude that regulations and ethical guidance should leave room for post-mortem use of personal data for research, provided that informed consent procedures are transparent on this issue, including the return of individual research findings to relatives. Future research is needed to explore underlying causes for differences in views, as well as ethical and legal issues on the appropriate level of control by deceased research participants (while alive) and their relatives.

Highlights

MethodsWe systematically searched for studies eligible for inclusion in this review using the following electronic databases: PubMed (including MEDLINE), CINAHL, EMBASE and Web of Science
Progress in medical science is promoted by the availability, sharing and use of vast amounts of personal
All studies were published in the last decade, signifying increased awareness of the topic likely correlated with the advancements in DNA sequencing. Both quantitative and qualitative methods were found to be used in ascertaining the views and experiences of patients, relatives, healthy controls, researchers and IRB members about (1) the use of research data after death, and (2) the post-mortem return of individual genetic research results to relatives

Summary

Methods

We systematically searched for studies eligible for inclusion in this review using the following electronic databases: PubMed (including MEDLINE), CINAHL, EMBASE and Web of Science. Our search encompassed studies published in English up to 31 December 2018. The search strategy contained synonyms and sub-topics —in the form of database-specific subject headings as well as free terms—of the following concepts: post-mortem; health-related and genetic data; research ethics; stakeholders; preferences. These synonyms were discussed among the research team beforehand in order to facilitate finding all relevant papers, such as those discussing different types of stakeholders (e.g., research participants, relatives and the general public).

Results

Discussion

Conclusion