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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 (PMDD) 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.

This chapter follows the argument that personal medical data should be made available for scientific research by enabling and encouraging individuals to donate their medical records after death, provided that this can be done safely and ethically. While medical donation schemes with dedicated regulatory and ethical frameworks for blood, organ or tissue donations are already in place, no such ethical guidance currently exists with regard to personal medical data. In addressing this gap, this chapter presents the first ethical code for posthumous medical data donation (PMDD). It is based on five foundational principles and seeks to inform and guide the implementation of an effective and ethical PMDD scheme by addressing the key risks associated with the utilisation of personal health data for the promotion of the common good.