2019
DOI: 10.1007/978-3-030-04363-6_7
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Medical Data Donation, Consent and the Public Interest After Death: A Gateway to Posthumous Data Use

Abstract: Posthumous medical data donation (PMDD) could deliver a longitudinal dataset that facilitates significant advances in health research. This chapter focuses on a central challenge of PMDD, namely what good governance looks like in circumstances where consent does not provide a 'single magic bullet'. The central argument is that consent in PMDD must be properly understood as merely one aspect of a holistic governance regime, and that more emphasis ought to be placed on the role of authorisation. This brings to t… Show more

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