Abstract
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.
Highlights
Numerous health conditions affecting large parts of the population remain under- researched
The focus is on posthumous medical data donation (PMDD), which should be enabled as a matter of urgency by putting in place an ethical code of PMDD
In light of both the benefits and potential risks involved in wide donation of personal medical data, there is a need for an ethical code of PMDD that addresses key challenges, including consent, privacy, security and ownership
Summary
Numerous health conditions affecting large parts of the population remain under- researched. While some progress has been made in discovering genetic or biological markers to identify people at greater risk of contracting certain diseases, little is known about the interpersonal differences that make someone a sufferer while sparing others with identical markers. Identifying and understanding these underlying differences is hard partly because of a lack of relevant data. The article starts with an outline of what is meant by PMDD, followed by an explanation of the reasons for enabling PMDD. We stress the need to define an ethical code specific to PMDD, and propose five foundational principles for such a code
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