An ALRC–AHEC Joint Inquiry

1.1  In August 2000, the Attorney-General of Australia, the Hon Daryl Williams AM QC MP, and the then Minister for Health and Aged Care, the Hon Dr Michael Wooldridge MP, announced that an inquiry into genetic testing and information would be established, to be conducted jointly by the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) of the National Health and Medical Research Council (NHMRC).^[1] On 5 February 2001, the same Ministers announced that Terms of Reference had been settled and signed,^[2] signalling the formal start of the joint inquiry (the Inquiry).

1.2  Following representations from the ALRC, AHEC and others, the responsible Ministers approved an extension of time to the final reporting date to 31 March 2003, expressly in order to afford greater opportunities for public participation in the Inquiry’s consultative processes.^[3]

1.3  The Government’s decision to opt for a joint inquiry reflects the wide array of legal and ethical concerns surrounding the field of human genetic samples and information. The ALRC has experience in dealing with legal issues that involve important ethical and social dimensions, and well-tested processes for engaging in effective community consultation.^[4] The Commission has worked on medico-legal issues before—most notably in relation to alcohol, drugs and driving,^[5] human tissue transplants,^[6] and informed consent to medical procedures.^[7] On 17 December 2002, the Attorney-General announced that the ALRC’s next inquiry, under fresh terms of reference, would look at issues relating to gene patenting and human health.^[8]

1.4  Given the nature of the current Inquiry, it was considered that the addition of the specialist expertise of AHEC would be valuable to the success of the Inquiry. AHEC is a principal committee of the NHMRC, advising the parent body on ethical issues relating to health, and developing guidelines for the proper conduct of medical research involving humans.^[9] The Minister for Health and Ageing has asked AHEC also to play a role in the promotion of community debate on health ethics issues, monitor the work of Human Research Ethics Committees (HRECs), and monitor and advise on international developments in health ethics. AHEC’s membership is specified in its establishing legislation, and draws on experts in philosophy, the ethics of medical research, public health and social science research, clinical medical practice and nursing, disability, law, religion and health consumer issues.^[10]

1.5                    Some of AHEC’s recent work of particular relevance to this Inquiry includes the National Statement on Ethical Conduct in Research Involving Humans (the National Statement),^[11]Guidelines for Genetic Registers and Associated Genetic Material,^[12] and an information paper Ethical Aspects of Human Genetic Testing.^[13] AHEC also has produced a Handbook to assist HRECs in applying the National Statement,^[14] and is currently engaged in the process of reviewing the guidelines governing the use of Assisted Reproductive Technologies in Australia, as well as participating in the NHMRC working group developing guidelines for xenotransplantation.