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Legislative Assembly for the ACT: 2016 Week 2 Hansard (18 February) . .

Page.. 656..

It requires ethical approval of all research projects, which is a requirement under the guardian act. The medical approach includes processes to be followed by the decision maker and adopted when considering medical research matters.

Madam Deputy Speaker, we do have a concern with this legislation. I do understand the principle involved and we will be seeking to move an amendment today to make sure that this bill is prospective and not retrospective. We must ensure that the power of attorney is carefully defined and reviewed before we allow medical research to be approved through a power of attorney by the client and their authorised representative. In our view, on balance, we believe that it should not be applied retrospectively. So we will support this legislation in principle but I look forward to the Assembly's support of my amendment in the detail stage.

MR RATTENBURY (Molonglo) (4.47): This is a somewhat challenging bill to read cold and separate from the explanatory statement and the useful critique of the scrutiny committee dealing, as it does primarily, with essential human rights issues regarding medical treatment and experimentation and reduced decision-making capacity. The core of the ACT Greens support for this bill, therefore, rests on the motivation behind the bill's creation and the clear limitations imposed to allow a substitute decision maker to consent to a person with impaired decision-making capacity to participate in potentially beneficial medical research.

I am obviously not a medical professional and nor have I had examples in my personal life that would have provided me with insight into the realities of being a carer supporting a loved one with impaired decision-making capacity. But I can imagine times when these two roles would coincide and agree on a position to consider experimental treatment. The most obvious example I could imagine would be a situation where a person is suffering from Alzheimer's disease leading to dementia. This tragically disabling disease is a major and growing health concern in Australia that reduces a person's memory, capacity to reason and can ultimately end in death. According to Alzheimer's Australia, there are more than 353,800 Australians living with dementia in 2016, and this number is expected to increase to 400,000 in less than five years.

Without a medical breakthrough, the number of people with dementia is expected to be almost 900,000 by 2050. In recognition of this growing concern, the federal government is providing an additional $200 million for dementia research over the next five years. This funding will significantly boost funding for Australia's dementia research sector to over $60 million per annum. At present there is no prevention or cure for most forms of dementia. However, some medications have been found to reduce symptoms. But I can well imagine that this increased research funding will see a rise in possible experimental treatments being developed and the issues of enduring power of attorney and guardianship orders that we are debating today will, therefore, become a very real issue, if they are not already.

Sections 41B, C and D, in particular, go to the protections offered and the processes and considerations that must be adhered to to allow such treatment or research to commence. This is a bill to amend the Powers of Attorney Act 2006, the Guardianship and Management of Property Act 1991 and the Medical Treatment (Health

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