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Protecting Dignitary Interests of Biobank Research Participants : Lessons from Havasupai Tribe vs. Arizona Board of Regents
Law, Innovation and Technology (2013)
  • Kristof Van Assche
  • Serge Gutwirth
  • Sigrid Sterckx
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.
Publication Date
2013
Citation Information
Kristof Van Assche, Serge Gutwirth and Sigrid Sterckx. "Protecting Dignitary Interests of Biobank Research Participants : Lessons from Havasupai Tribe vs. Arizona Board of Regents" Law, Innovation and Technology Vol. 5 Iss. 1 (2013)
Available at: http://works.bepress.com/serge_gutwirth/110/