Christian perspectives on the regulation of posthumous medical data donation (PMDD): An empirical study

Abstract

This article sets out the results of an empirical study exploring the intersection of religious views and perspectives and the regulation of post-mortem data donation (PMDD), particularly focusing on issues of consent and individual control. Through semi-structured interviews with practicing members of the Christian clergy of the United Kingdom, the study investigated the ethical and practical implications of integrating religious viewpoints into secular debates on data protection and privacy, using PMDD as a use case. The findings revealed a consensus among participants that religious perspectives, including Christian perspectives, can enhance the ethical robustness of PMDD regulatory frameworks by promoting values such as dignity, autonomy, and respect for individual preferences. However, the study also identified a possible gap in the systematic consideration of these views within existing regulatory practices pertaining to data protection and privacy. Pursuant to these findings, the article argues for the adoption of an "opt-out" consent mechanism, which balances public health benefits with individual rights, as a pragmatic approach to PMDD regulation. Additionally, the article highlights the potential for religious insights to enrich policy dialogues, ensuring that legal rules relating to data protection and information governance resonate with a broader array of societal values.