Biobanks emerged in the early 2000s and now facilitate scientific research through the provision of resources for research that requires a large scale of biospecimens and data. Biobank projects have also become intertwined with complicated socio-economic initiatives to boost economic development or to shape community identity. While legislators continue to debate the ethical and regulatory challenges associated with biobanks, the federal regulation over research involving human subjects, the Common Rule, is based on a traditional research model that fails to address the complex challenges unique to biobanking. Through an examination of the proposed revisions to the Common Rule concerning research using biospecimens and ethical controversies regarding informed consent, privacy, ownership, and benefit-sharing, this article highlights a participatory aspect of biobanking that calls for public engagement with respect to both ethics and norms. Many biobank projects try to appeal to a sense of civic engagement whereby citizens have rights as well as responsibilities with respect to participation in collaborative scientific projects. Domestic and international guidelines describe incorporating public engagement with biobanking as an essential means of protecting research participants and achieving good governance. International experiences with various approaches to public engagement have also proven that involving the general public is feasible. Moreover, the principle of democratic deliberation, which was proposed by the Presidential Commission for the Studies of Bioethical Issues to be a guiding principle for bioethics policy decisions further underscores the criticality of public engagement in biobanking.
Bank on We the People: Why and How Public Engagement is Relevant to Biobanking,
Mich. Tech. L. Rev.
Available at: https://repository.law.umich.edu/mtlr/vol25/iss2/3