Enabling Posthumous Medical Data Donation: A Plea for the Ethical Utilisation of Personal Health Data
31 Pages Posted: 15 May 2018
Date Written: April 1, 2018
In this article, we argue that personal medical data should be made available for scientific research, by enabling and encouraging patients to donate their medical records once deceased, in a way similar to how they can already donate organs or bodies. This research is part of a project on posthumous medical data donation (PMDD) developed by the Digital Ethics Lab at the Oxford Internet Institute, University of Oxford, and funded by Microsoft. We provide ten arguments to support the need to foster posthumous medical data donation. We also identify two major risks—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. We reject the argument that record-based medical research should proceed without the need to ask for informed consent, and argue for a voluntary and participatory approach to using personal medical data. Our analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks providing five foundational principles for ethical medical data donation; and suggesting a draft for such a code.
Keywords: data donation, medical data ethics, ethical code, data philanthropy
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