Department of Ethics, Law and Humanities, Amsterdam UMC (Location AMC), University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
Sci Eng Ethics. 2022 Aug 3;28(4):32. doi: 10.1007/s11948-022-00387-0.
In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health research, its intrinsic value is grounded in respect for the dignity of the post-mortem informational entity. However, existing guidance on post-mortem data protection is available only in the context of genetic studies. In comparing the characteristics of genetic data and other health-related data, we identify two features of DNA often given as arguments for this genetic exceptionalism: relationality and embodiment. We use these concepts to show that at the appropriate Level of Abstraction, there is no morally relevant distinction between posthumous genetic and other health data. Thus, genetic data should not automatically receive special moral status after death. Instead we make a plea for 'contextual exceptionalism'. Our analysis concludes by reflecting on a real-world case and providing suggestions for contextual factors that researchers and oversight bodies should take into account when designing and evaluating research projects with health data from deceased subjects.
在本文中，我们运用信息伦理理论论证了，在健康数据研究背景下，已故者对其健康数据享有隐私权，这一权利应体现在法规和准则中。人死后不再是生物学意义上的主体，但会作为信息实体继续存在，其仍可能受到伤害或损害。我们发现，承认死后隐私权的工具价值在于维护健康研究的社会契约，其内在价值则源于对死后信息实体尊严的尊重。然而，现有的死后数据保护指南仅适用于遗传研究。在比较遗传数据和其他健康相关数据的特征时，我们确定了 DNA 作为遗传例外主义论据的两个特征：关联性和体现性。我们使用这些概念表明，在适当的抽象层面上，死后遗传数据和其他健康数据之间没有任何具有道德相关性的区别。因此，遗传数据在死后不应自动获得特殊的道德地位。相反，我们呼吁“情境例外主义”。我们的分析通过反思一个真实案例得出结论，并为研究人员和监督机构提供了建议，以便他们在设计和评估涉及已故主体健康数据的研究项目时，考虑到情境因素。
