Exploring perspectives of interest-holders on the use of health and genomic data from deceased participants in research: An updated systematic review.

Abstract

The use of research biobanks and databases often involves prolonged storage of data, meaning that an increasing amount of deceased participants' data is being used in research. Research participants are not always informed of the intent to continue using their data post-mortem, and using such data affects the privacy of decedents and their surviving relatives. It is therefore important to assess the perspectives of interest-holders in this respect, considering the rapid progress of big-data technologies, new privacy regulations in the EU and unprecedented data sharing during the COVID-19 pandemic. This paper aimed to update a systematic review by Bak et al., to investigate the views of interest-holders on post-mortem data sharing in research. This systematic review followed the same search strategy and inclusion criteria as the previous review, focusing on new empirical evidence on the views of interest-holders regarding the post-mortem sharing or re-use of genetic or health data of research participants, from studies published in 2019-2025. It is reported based on the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRIMSA) statement. Findings of included studies were narratively synthesized. The updated systematic review identified seven studies involving 2151 participants, which were of high quality. The main themes of these studies related to perceived acceptability of post-mortem data sharing, aspects of consent (including broad consent), sharing clinical findings with relatives, and barriers and facilitators to data sharing. The findings illustrate that post-mortem genetic and health-related data use remains a relatively under-explored subject, with evident gaps in legislation and guidance.