Precision medicine research involving human biological material is becoming an increasingly central component of healthcare, and its potential is quickly growing due to rapid technological progress. As the infrastructural and governance groundwork is currently being laid to accommodate these developments, Lee rightly stresses the importance of ensuring fair and equitable distribution of benefits across society. However, the advances in tissue research have also led to substantial and growing concerns for the protection of individual rights and interests of tissue providers, such as bodily integrity and the right to self-determination (Boers, van Delden, and Bredenoord 2019; Waldby and Mitchell 2006).
These challenges in turn have led to extensive calls for more continuous involvement of tissue providers, to increase their influence on how their cells and data are used. In this commentary we therefore argue that, while we agree with Lee that justice should be a core aspect of any governance framework in precision medicine, an extension of the scope of Lee’s (2021) proposal is needed. Ethically sound governance means also acknowledging individual tissue providers as persons who are morally deserving of a degree of reciprocity from the research enterprise in order to protect their rights and respect their interests.
Full Access Link: American Journal of Bioethics