Defining the scope of the Inquiry

The Terms of Reference

1.9   The Terms of Reference for the Inquiry are set out in full above. They ask the ALRC and AHEC to have regard to the broader landscape, including ‘the rapid advances in human genetic technology’ and ‘emerging issues about the control of, ownership of, and intellectual property rights in relation to human genetic samples and information’. The Terms of Reference also acknowledge the breadth of contexts in which the use of genetic information may be relevant, and of potential concern. These include employment; health, including medical research, pharmaceuticals and health administration; insurance and superannuation; and law enforcement.

1.10  The ‘action’ part of the Terms of Reference specifically asks the ALRC and AHEC to inquire into and report on whether, and to what extent, a regulatory framework is required to:

• protect the privacy of human genetic samples and information;
• provide protection from inappropriate discriminatory use of human genetic samples and information; and
• reflect the balance of ethical considerations relevant to the collection and uses of human genetic samples and information in Australia.

1.11  This is to be done in a way that has regard to the range of Australian ethical opinion on application of human genetic information, as well as the benefits and potential benefits of the scientific and medical applications of the new technology. The Terms of Reference also note the ‘global dimensions of issues relating to research, regulation and the protection of interests’.

1.12  As suggested by the Terms of Reference, the specific drivers for the establishment of the Inquiry were concerns about privacy and discrimination,especially in the contexts of employment andinsurance,^[15] as well as ethical and other oversight of medical and scientific research, clinical practice, and the collection and use of genetic databases. All of these matters have remained central to the Inquiry’s research and consultation efforts.

Matters outside of this Inquiry

1.13  The Issues Paper (see below) described the manner in which the Inquiry has applied the Terms of Reference in practice, and included a brief discussion of a number of related matters that were considered to be outside of the scope of the present project. These matters include the regulation of genetically modified organisms; access to assisted reproductive technology; embryonic stem cell research and human reproductive cloning; and gene patenting.^[16] As noted above, the ALRC will be inquiring into matters relating to gene patenting and human health under fresh terms of reference, with a reporting date of 30 June 2004.^[17]