Part B sets the scene for the bulk of the Report’s recommendations by examining the existing regulatory framework in respect of ethics, privacy and discrimination that applies to the collection, use and protection of human genetic samples and information. The discussion in Chapter 6 deals with the way ethical considerations influence the various contexts in which human genetic samples and information are used. In contrast, the discussions of privacy in Chapters 7 and 8 and of discrimination in Chapter 9 are based largely around formal legal regulation.
Chapter 6 describes the nature of ethical considerations, the features of genetic information that raise these issues and the ways that decisions involving ethical considerations can be justified. It describes the many philosophical and theological concepts and theories that have contributed to the contemporary understanding of ethics—including, for example, ‘principlist’, ‘consequentialist’ and ‘critical’ ethical theory. The Inquiry believes that any successful scheme for regulating genetic information in the public interest must incorporate and internalise a strong ethical dimension, and keep in mind the important role that ethics should play in areas that come under formal, legal regulation.
Chapter 7 summarises the existing complex, fragmented and overlapping frameworks for the protection of information and health privacy based on the Privacy Act 1988 (Cth) (Privacy Act) and similar state and territory legislation. The chapter recommends that the Commonwealth, States and Territories, as a matter of high priority, should pursue the harmonisation of information and health privacy legislation as it relates to human genetic information.
A key issue identified by the Inquiry, and examined separately in Chapter 8, is whether information and health privacy legislation should be extended to cover genetic samples. Although genetic samples hold a great deal of personal information that may be revealed by DNA testing and analysis, the samples themselves do not currently receive protection under the Privacy Act. The Inquiry recommends that the coverage of the Privacy Act be extended to provide minimum, legally enforceable, privacy standards for the handling of identifiable genetic samples.
Chapter 9 describes the legal framework for preventing discrimination in Australia at the federal, state and territory levels, and includes a discussion of current developments in the international arena. The Inquiry considered the desirability of ‘stand alone’ legislation to address discrimination on the ground of genetic status, but concludes that working within the existing legal framework is more likely to promote certainty and consistency, with the efficiency of building upon existing understandings and practices. The Inquiry recommends amendment of the Disability Discrimination Act 1992 (Cth) (DDA) to clarify that the legislation applies to unlawful discrimination based on genetic status.