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Protecting Dignitary Interests Of Biobank Research Participants : Lessons From Havasupai Tribe Vs. Arizona Board Of Regents, Kristof Van Assche, Serge Gutwirth, Sigrid Sterckx

Serge Gutwirth

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 …