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Capital, Trust and Consultation: Databanks and Regulation in Australia


Stranger, MJA and Chalmers, DRC and Nicol, D, Capital, Trust and Consultation: Databanks and Regulation in Australia, Critical Public Health, 15, (4) pp. 349-358. ISSN 0958-1596 (2005) [Refereed Article]

DOI: doi:10.1080/09581590500523376


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. © 2005 Taylor & Francis.

Item Details

Item Type:Refereed Article
Research Division:Law and Legal Studies
Research Group:Public law
Research Field:Public law not elsewhere classified
Objective Division:Law, Politics and Community Services
Objective Group:Justice and the law
Objective Field:Justice and the law not elsewhere classified
UTAS Author:Stranger, MJA (Dr Mark Stranger)
UTAS Author:Chalmers, DRC (Professor Don Chalmers)
UTAS Author:Nicol, D (Professor Dianne Nicol)
ID Code:38268
Year Published:2005
Deposited By:Law
Deposited On:2005-08-01
Last Modified:2007-08-14

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