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Data sharing is increasingly becoming an essential component of clinical practice and biomedical research. The debate has shifted from whether or not to exchange data to how best to achieve optimal sharing. This raises new ethical and legal challenges, particularly with regard to consent and privacy. This article discusses recent developments in the formulation of best practice guidelines for data sharing. Particular attention is focused on the Global Alliance for Genomics and Health (GA4GH) draft Framework of Conduct for Data Sharing. [ABSTRACT FROM AUTHOR]

The article presents a case study regarding life insurance and genetics-related information in Australia. It cites James who life insurance applications was changed as he had undergone a genetic test and was found to carry a mutation in the MSH6 gene. It adds that the case study adds to the evidence that incorrect risk estimates are used by by the insurance industry and life insurance concerns can act as hindrance to genetic testing.

Genetic discrimination, defined as the differential treatment of individuals or their relatives on the basis of actual or presumed genetic differences, is an emerging issue of interest in academic, clinical, social and legal contexts. While its potential significance has been discussed widely, verified empirical data are scarce. Genetic discrimination is a complex phenomenon to describe and investigate, as evidenced by the recent Australian Law Reform Commission inquiry in Australia. The authors research project, which commenced in 2002, aims to document the multiple perspectives and experiences regarding genetic discrimination in Australia and inform future policy development and law reform. Data are being collected from consumers, employers, insurers and the legal system. Attempted verification of alleged accounts of genetic discrimination will be a novel feature of the research. This paper overviews the early stages of the research, including conceptual challenges and their methodological implications. [ABSTRACT FROM AUTHOR]

The article discusses the legislative developments on Privacy Act 1988 that lead to the creation of Australian Privacy Principles (APPs) which replaced the Information Privacy Principles (IPPs) and National Privacy Principles (NPPs). Topics mentioned include the aim on privacy regulation consistency, the varied at-risk genetic relatives of disclosing genetic information, and the highlight on the lack of uniformity which needs the requirement on proactivity from territories and states.

Focuses on the consequences of genetic discrimination for the individual concerned and society as a whole. Human rights issue that carries significant social, legal and policy implications; Nature and extent of genetic discrimination across countries where genetic services are highly developed.