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Protecting Dignitary Interests of Biobank Research Participants: Lessons from Havasupai Tribe v Arizona Board of Regents

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Abstract:

This paper discusses the recent Havasupai case with a view to investigating the concept of dignitary harm and its relevance in the context of biobank research. The Native American Havasupai tribe objected to research that had been done on their blood samples and to results that were stigmatising and disruptive to their selfunderstanding. We show that the Havasupai case holds particularly valuable lessons regarding appropriate consent requirements, the level of protection offered by anonymisation procedures, and the scope of participants' right to withdraw consent. Next we consider the Code of Federal Regulations and identify major flaws which are exposed by the Havasupai case. In the final part of the paper we seek to show that biobank research participants seeking redress under present tort doctrine will be left without a remedy, because courts have not recognised a duty of special care outside the therapeutic setting and have not considered dignitary harms to be compensable injuries. We suggest two ways in which current tort doctrine may be modified to better protect the dignity of biobank research participants, one involving an expansion of existing remedies and the other concerning the development of a distinct dignitary tort.

Document Type: Research Article

DOI: http://dx.doi.org/10.5235/17579961.5.1.54

Publication date: July 1, 2013

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  • Stem cell research, cloning, GMOs ... How do regulations effect such emerging technologies? What impact do new technologies have on law? And can we rely on technology itself as a regulatory tool?

    The meeting of law and technology is rapidly becoming an increasingly significant (and controversial) topic. Law, Innovation and Technology is, however, the only journal to engage fully with it, setting an innovative and distinctive agenda for lawyers, ethicists and policy makers. Spanning ICTs, biotechnologies, nanotechnologies, neurotechnologies, robotics and AI, it offers a unique forum for the highest level of reflection on this essential area.

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