The Laws of Privacy and Consent and Large-scale DNA Biobanking in New Zealand

Abstract

Large-scale population genetic databases have become increasingly common around the world. However, these initiatives are financially and politically costly and fraught with ethical, legal and social implications that few have successfully overcome. The unique nature of biobanking challenges established research practice; in particular, the immutable status of traditional ethical standards is hotly debated amongst scholars.

This thesis examines current privacy and consent laws in New Zealand and the adequacy of these laws to protect the interests of biobank participants. This New Zealand-focused examination also takes into consideration the obligation of the Crown to protect Maori interests and discusses how these obligations may impact on any future policy involving the collection, storage and use of genetic material in biobanking. I conclude that the current state of the law is piecemeal and inadequate in its protection of biobank participants. However, current guidelines are progressive in its flexibility towards modifying traditional consent norms to accommodate the uncertainty of future unspecified research. This thesis concludes by highlighting the need for more research in the area of Maori perspectives on biobanking and the importance of avoiding the pitfalls of genetic exceptionalism in any future reform that may takes place.