Wednesday, March 31, 2010

Biobanks and the 'well-being' of humanity: integrating consent to research with the capability approach - Critical Public Health

One of my papers on biobanks and genetic research appears in the latest issue of Critical Public Health. The paper (titled 'Biobanks and the 'well-being' of humanity: integrating consent to research with the capability approach') explores if and how the capability approach--an approach proposed by political philosophers Amartya Sen and Martha Nussbaum--can help us think about ethical, legal and social questions raised by genetic research. Throughout the paper, I argue that the capability approach is a conceptual tools that proves to helpful to smoothen the demanding requirements of informed consent, which are perhaps too demanding when it comes to research tools such as biobanks that can be established and efficiently operated only if the informed consent is not narrowly construed in the sense of prohibiting all uses of collected biological samples that are not explicitly mentioned at the time the samples are collected from sample sources. The capability approach contributes by helping us think of the big picture: if we take into account the fact that research participations, biobankers and investigators all belong to a political community in which certain duties and protections are in place (as the capability approach demands), most of the red flags raised by biobanking are no longer problematic. These duties and other constraints provide sufficient protection to research participants even not all sample uses are specified in the informed consent at the time the samples are collected.

Although published in 2010, I started writing the paper in 2004. As a consequence, the paper is in part outdated and in part timely. The discussion on the merits of 'broad' consent in biobanking is not very relevant. In the past few years, consensus has emerged, in the literature and in the policy arena, that such form of consent is justified and appropriate, and that it meets the minimum requirements of informed consent.
The paper is much more relevant with regard to the quest for a theory of political science that is useful and responsive in dealing with difficult policy issues that cut deep into our assumptions of how societies are best arranged. I think, as I argue in this paper, that the capability approach is rather appealing and quite useful. In 2006, I conducted a similar analysis, and reached a similar conclusion, in the area of transnational human rights litigation (see my The Global Enforcement of Human Rights: The Unintended Consequences of Transnational Litigation in the International Journal of Human Rights).
Most recently, I read an thoughtful and persuasive application of the capability approach to the notion of property and ownership rights. In 2009, Professor Gregory Alexander, from Cornell, wrote in the Cornell Law Review about The Social-Obligation Norm in American Property Law. Prof. Alexander proposes a view of property informed by the capability approach and in alternative to the law-and-economics approach. Alexander argues that a social obligation is embedded in the recognition of an individual's right to own property. Once again, Sen and Nussbaum's analysis as political philosophers proves to be far-reaching, indeed useful to legal scholars and legal philosophers in particular.
My thinking about the relationship between political philosophy and law and the contribution of the capability approach to this debate is also the focus of a work in progress on tort law and some of its philosophical underpinnings. It turns out I am writing a paper on the topic, which I will present at a conference in Colombia at the end of April.

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