Capital, trust & consultation: Databanks and regulation in Australia

Abstract

The new genetics ‘industry’ has emerged at a time of public ambivalence towards science, an ambivalence that could move to outright distrust when the commercial imperatives of increasingly market-oriented science gradually replace the more traditional imperative of ‘public good’. Genetics research and development is at the vanguard of the movement of science into the market economy and, as such, has come under intense public scrutiny. The political and social environment now demands public participation in the development of regulatory structures. Commercialization aims for rapid advances in research, leading to new genetic therapies and other public health benefits. However, this rapid progress has resulted in human tissue banks and genetic databases un(der)regulated in many countries, and challenges to accepted notions of privacy, ownership and consent. This paper presents an outline of the way Australia has embraced public participation in the development of a regulatory framework governing human genetic databanks. It argues that after a two-year, two-stage national inquiry into the protection of genetic information, the country now stands at a crossroads: it either addresses the recommendations of the inquiry—providing a model for the development of public trust in the human genetics industry, and in the state to regulate it, or continues to ignore the recommendations, fostering cynicism regarding the consultation process and an even greater level of distrust in the ability/willingness of the state to regulate the industry.