Stakeholders' Perspectives on the Post-mortem Use of Genetic and Health-related Data for Research: a Systematic Review

Overview

Journal Eur J Hum Genet

Specialty Genetics

Date 2019 Sep 19

PMID 31527854

Citations 10

Authors

Marieke A R Bak

M Corrette Ploem

Hakan Atesyurek

Marieke T Blom

Hanno L Tan

Dick L Willems

Affiliations

Soon will be listed here.

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.

Citing Articles

Data-driven sudden cardiac arrest research in Europe: Experts' perspectives on ethical challenges and governance strategies.

Bak M, Vroonland J, Blom M, Damjanovic D, Willems D, Tan H Resusc Plus. 2023; 15:100414.

PMID: 37363125 PMC: 10285638. DOI: 10.1016/j.resplu.2023.100414.

To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes.

Noroozi M, Bahmani F, Mousavizadeh K, Saeedi Tehrani S, Hashemi A, Forouzandeh M J Med Ethics Hist Med. 2023; 15:13.

PMID: 37143521 PMC: 10151722. DOI: 10.18502/jmehm.v15i13.11569.

Towards trust-based governance of health data research.

Bak M, Ploem M, Tan H, Blom M, Willems D Med Health Care Philos. 2023; 26(2):185-200.

PMID: 36633724 PMC: 9835739. DOI: 10.1007/s11019-022-10134-8.

From collected stamps to hair locks: ethical and legal implications of testing DNA found on privately owned family artifacts.

McKibbin K, Shabani M, Larmuseau M Hum Genet. 2022; 142(3):331-341.

PMID: 36456648 DOI: 10.1007/s00439-022-02508-y.

Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.

Bak M, Willems D Sci Eng Ethics. 2022; 28(4):32.

PMID: 35922650 PMC: 9349167. DOI: 10.1007/s11948-022-00387-0.

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