MBBS Curriculum 2020

Privacy, consent and health data: using identifiable health data for secondary purposes ethically, but without consent

16 March 2017 - 17:00-18:30

LectureJames Wilson, Department of Philosophy, UCL

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Abstract:

A number legal regimes (e.g. England’s section 251 of the NHS Act 2006), have a mechanism that allows research involving identifiable health information to proceed without consent for a large population on grounds of the impracticability of gaining consent, even though the same research project would require the consent of all participants were the number of participants significantly smaller. This paper examines the cogency of the reasoning involved in such decisions, arguing that it seems difficult to justify on the assumption that in usual circumstances individuals have a right that their identifiable health information not be used without their consent. If using someone’s identifiable information without their consent would violate their rights if they were a member of a small group, why should it stop being a violation of that person’s rights if the group they are in becomes sufficiently large? I propose instead a new ethical justification for such use of health data, which I call the reasonable trespass account.

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