Page 658 - Week 02 - Thursday, 18 February 2016
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research. For example, the bill requires all substitute decision makers to give effect to the patient’s wishes when considering whether to consent to the patient’s participation in medical research. This includes a health direction to withdraw from or refuse particular types of medical treatment, including medical research.
The bill also requires the medical research to be approved by a human research ethics committee. The potential benefit of the medical research to either the patient or other people with the same condition must outweigh—must outweigh—the risk or inconvenience to the patient or the patient’s quality of life.
In addition, the decision maker must not consent if the patient is likely to regain capacity before the latest time at which the patient may meaningfully participate in the research. This is intended to provide the maximum opportunity for the patient to regain capacity if possible.
To assist the substitute decision maker with this process, the bill includes a mechanism for the enduring attorney or guardian to seek the assistance of the ACAT. An interested person, such as a relative or close friend of the patient, may also apply to the tribunal for a review of a decision about the participation of the patient in medical research.
I thank the scrutiny committee for its comments on the bill. This bill is an excellent example of the interplay of human rights cutting across the right to freedom from medical experimentation without consent, the right to recognition and equality before the law and to some extent the right to security of a person. The bill appropriately balances these rights to provide access to potentially beneficial research for all people with limited decision-making capacity while providing important safeguards to protect their rights.
This bill is an important step forward in many ways. It is important for people who have not been able to take part in valuable research up until now. It is important for research in the ACT, which can now go ahead. It is important for carers, guardians and enduring attorneys in that they now have a clearly articulated framework for making decisions regarding participation in research.
I want to thank the medical and community service stakeholders who assisted with the development of this bill. This significant collaboration has resulted in a bill that promotes a person’s access to the most beneficial medical treatment available while respecting a person’s right to refuse that treatment.
The bill will also assist health researchers to develop innovative treatments and increase medical opportunities for people with impaired decision-making capacity, while protecting those people at such a vulnerable time in their lives. I commend the bill to the Assembly.
Question resolved in the affirmative.
Bill agreed to in principle.
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