Review of the Guardianship & Administration Act 1990 (WA)

This submission to the review of Western Australia’s Guardianship & Administration Act 1990 is confined to the participation in human research of individuals who are unable to make a reasonable judgment or decision for themselves. Research Australia maintains that, as the Act stands, these individuals are effectively denied the opportunity to benefit from research, including access to the latest drugs at no cost through clinical trials. It proposes amendments to create a legal framework that protects the individual, does not unduly burden relatives and friends, and is safe, timely and efficient. Its three proposals are that Human Research Ethics Committees (HRECs), operating under the National Statement on Ethical Conduct in Human Research, determine whether such individuals are eligible to participate in a given study and on what conditions; that the Act’s existing provisions for a person responsible to consent to treatment be extended, as far as practicable, to consent to research participation; and that the best-interests test be retained, with statutory guidance on weighing benefits and risks, the person’s likely wishes and potential benefit to others with the same condition. The Office of the Public Advocate and the State Administrative Tribunal would retain oversight. The submission also considers emergency research without a person responsible, where it sees no need for amendment, and supports allowing research participation to be addressed in Advance Health Directives.