Biobanks and the ‘well-being’ of humanity: integrating consent to research with the capability approach

Abstract

Among the important ethical challenges that biobanks raise, the shortcoming of the traditional acceptation of informed consent is one of the most debated. The protection of research participants’ autonomy is a central theme in current ethical reasoning on biomedical research. In this article, I argue that moral philosophy offers the opportunity to broaden the debate raised by the shortcomings of the established doctrine of informed consent when applied to biobanking activities. The capability approach and deliberative democracy theories are particularly interesting in analyzing biobanks and informed consent because they shift the focus from the relationships patient/physician and participants in research/investigator–the bioethics focus–to the well-being of research participants and their ability to self-determination understood as a mean by which individuals participate in the societal arrangements that underscore biobanks’ regulation, thus fostering the democratic deliberative process. My claim is that many ethical issues raised are better understood and eventually solved if a broader definition of the notion of autonomy as put forth by moral and political theory is integrated in the discourse of biobanking and informed consent.

Philosophy is like this: eternally unsettled and only occasionally disturbed by new facts

Matt Ridley, Nature via Nurture, p.23

Keywords:

• ethics
• genomics
• law