Enabling posthumous medical data donation: a plea for the ethical utilisation of personal health data

In Jenny Krutzinna & Luciano Floridi (eds.), The Ethics of Medical Data Donation. Springer Verlag (2019)
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Abstract
This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals 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 developed by the Digital Ethics Lab at the Oxford Internet Institute. Ten arguments are provided to support the need to foster posthumous medical data donation. Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to ask for informed consent is rejected, and it instead a voluntary and participatory approach to using personal medical data should be followed. The 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.
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