Part A: Introduction

Chapter 1 provides an introduction and background to the Report, and includes the details of the Inquiry’s research and public consultation efforts. Chapter 2 is intended to serve as a basic ‘primer’ on genetics and human health, to provide the scientific background for this Report. Among other things, the chapter describes the emerging understanding of genetic science in the wake of the Human Genome Project, including: the nature of DNA, RNA, genes and chromosomes; patterns of inheritance of genetic traits; the interplay among genes and between genetics and the environment; and the implications of the ‘New Genetics’ for human health.

Chapter 3 examines the nature of genetic information and some of the facts (and myths) about the implications that may be drawn from information about a person’s genetic status. One of the central issues for the Inquiry was whether to accept arguments in favour of ‘genetic exceptionalism’—that is, the idea that genetic information is so fundamentally different from, and more powerful than, all other forms of personal health information that it requires different or higher levels of legal protection. On the other hand, genetic ‘inclusivists’ argue that genetic information is neither distinctive nor unique in its ability to predict an individual’s health, but indicates only a rough range of probabilities.

The Inquiry has concluded that an exceptionalist approach would divorce genetic information from the principles, processes and institutions that have been developed over time to provide ethical oversight of research, ensure best practice in clinical medicine, protect personal privacy, and prohibit unlawful discrimination. However, the Inquiry does accept that there are some special features and issues attaching to genetic information which make it necessary to engage in a thorough inspection of existing principles, practices and safeguards, and of the legal, ethical and regulatory landscape, to ensure that all of these are adequate to the task.

Chapter 3 also considers the dangers of ‘genetic essentialism’—a reductionist view of human beings as essentially consisting of their genes, with human worth describable in the language of genetics. The challenge for society is to maintain its moral and ethical compass, supporting those aspects of genetic science that reduce pain and suffering and increase quality of life, while firmly resisting the use of this knowledge to diminish personal freedom and personal responsibility, or create new opportunities for unfair discrimination.

It may be the case that scientific and technological advances will be so rapid that some of the bases for policy-making may be dated in a relatively short span of years. Chapter 4 seeks to address the ways in which the Inquiry’s recommendations are intended to have longevity in the context of rapid scientific change, such as through the establishment of institutions charged with the responsibility of providing expert advice about emerging issues in human genetics, as they arise.

Accordingly, in Chapter 5, the Inquiry recommends the establishment of an independent, standing advisory body—the HGCA—following the lead of the United Kingdom and Canada in this regard. The principal role of the HGCA would be to provide on-going, high-level technical advice to Australian governments about existing and emerging issues in human genetics, and the ethical, legal and social implications arising from these developments. The HGCA should have balanced and broad-based membership, involving community representation as well as persons with the appropriate technical expertise.

The HGCA also would play a leadership role at the national level in promoting harmonisation of laws and practices; promoting public engagement and community and professional education; and developing policy statements and national guidelines in this area, in association with other governmental agencies or the relevant industries and organisations. For example, the Inquiry recommends that the HGCA be assigned specific responsibility for assessing and making recommendations on whether particular genetic tests should be used for insurance underwriting or in employment for compelling occupational health and safety purposes.