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

Abstract

Since the explosion of research in human genetics some 40 years ago, legal and ethical experts have found it increasingly difficult to balance societal interests in the advancement of medical science with participants' interests, concerns and expectations. The landmark decision in Moore v Regents of the University of California 1 -which ruled that tissue donors do not possess property rights in their excised tissue-as well as widespread fears that genetic information may be used for insurance or employment discrimination, have put ownership and confidentiality issues at the forefront of the debate. 2 However, factors beyond the commonly anticipated risks must be taken into account when evaluating current tissue research practices, especially as we have entered a new era of research using large biobanks.