10 research outputs found
Disclosing genetic information to at‐risk relatives: new Australian privacy principles, but uniformity still elusive
Is uptake of genetic testing for colorectal cancer influenced by knowledge of insurance implications?
Public reaction to direct-to-consumer online genetic tests: Comparing attitudes, trust and intentions across commercial and conventional providers
The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study
Donor Perspectives on Issues Associated with Donation of Genetic Samples and Information: An Australian Viewpoint
Regulation and hESC Research in Australia: Promises and Pitfalls for Deliberative Democratic Approaches
The original publication can be found at www.springerlink.comThis paper considers the legislative debates in Australia that led to the passage of the Research Involving Human Embryos Act (Cth 2002) and the Prohibition of Human Cloning Act (Cth 2002). In the first part of the paper, we discuss the debate surrounding the legislation with particular emphasis on the ways in which demands for public consultation, public debate and the education of Australians about the potential ethical and scientific impact of human embryonic stem cells (hESC) research were deployed, and the explicit and implicit framing of the scope of public consultation. We then ask whether, given the calls for public consultations, debate and understanding, current work in democratic theory could be helpful in analysing the process of policy-making in these areas. In particular, we canvass the literature relating to aggregative and deliberative models of democracy for processes that support the legitimacy of policy. We identify features of the debate that reflect the appeal of deliberative approaches as well as some of the possible hurdles or limitations to developing deliberative democratic approaches to policy in ethically contentious areas.Susan Dodds and Rachel A. Anken