Privacy of genetic information

"22 December 2008". University of Otago department: LawThis thesis examines the tensions that arise between the rights and interests of individuals and their genetic relatives as a result of the familial nature of genetic information. The first tension exists between an individual's interest in maintaining privacy and confidentiality in relation to his or her genetic information, and a relative's interests in being informed of his or her potential risk of developing a condition that he or she was otherwise unaware of (that is, the right to know). The second tension exits between an individual's interest in sharing his or her genetic information with relatives, and his or her relatives' interest in remaining ignorant as to their genetic status (that is, the right not to know). In examining these tensions, this thesis examines whether the rights and interests of both individuals and their genetic relatives are adequately recognised and protected under New Zealand's existing health information privacy law. In doing so, it explores the scientific nature of genetic information, potential legal and ethical approaches to such information, and how existing law "fits" the familial nature of genetic information. It then examines approaches taken overseas in relation to the competing interests at stake and, against that backdrop, assesses the Privacy Commissioner's proposal for reform. Finally it recommends a course of action for amending New Zealand's health information privacy law, proposing to dispel the tensions identified above