Kraft and colleagues (2018) present an analysis of focus groups assembled to provide guidance on governance practices for biorepository-based research initiatives like the National Institutes of Health (NIH) All of Us Research Program of the Precision Medicine Initiative. They emphasize respondents’ interests in institutional structures and research relationships that go “beyond informed consent” and suggest that these responses support efforts to shift the focus of governance from enhancing biospecimen donor’s control over the disposition of their samples to improving the trustworthiness of the repository to make dispositional decisions on their behalf. By turning to trustworthiness as a normative guide for biorepository curation, the authors align their respondents with a laudable ongoing effort to encourage more transparency and accountability in biorepository governance. But it is not clear from their own data how much control respondents would agree to entrust to such “librarians,” or that the authors have thought through the limits of the model they seem to be endorsing. Their conclusions generate at least three important questions, as follow.
The American Journal of Bioethics 18 (4) : 23-25Full article