Our data? An examination of the possible role of individual consent in the regulation of posthumous medical data donation (PMDD)

Our data? An examination of the possible role of individual consent in the regulation of posthumous medical data donation (PMDD)
Henry Pearce
Computer Law & Security Review, 17 February 2022
Abstract
This article considers the regulation of posthumous medical data donation (PMDD) and examines the extent to which the law should require the opt-in ante-mortem consent of deceased persons for their medical data to be retained and used as part of PMDD initiatives. The article considers arguments on either side of this debate (i.e., pro-consent vs. anti- consent) before tentatively suggesting that, as a general matter, opt-in consent should not be required for medical data of deceased persons to be used for PMDD purposes. It is also proposed, however, that whilst opt-in consent should not be required by law, individuals should be provided with a qualified right through which they can object or “opt out” of their medical data being used in this way.