Julia Irwin (Fowler, Australian Labor Party) Share this | Hansard source

In this debate on the Prohibition of Human Cloning for Reproduction and the Regulation of Human Embryo Research Amendment Bill 2006, members will have a conscience vote, as has been the case on a small number of issues that have come before the parliament in my time. Members have used the format of the debate to express their own, often personal, reasons for supporting or opposing the bill. I say from the outset that I have looked at the arguments put in the Lockhart review report and, on those grounds alone, I would be prepared to support the bill.

I have to say that the scientific case for the changes made in this bill is well made in the Lockhart review. Those opposing this bill have failed to show how the potential benefits flowing from these scientific advances could otherwise be obtained. They have failed to show that alternatives to this approach can provide treatments so desperately needed. They are effectively closing the door on potential treatments which may relieve much suffering and provide worthwhile advances in improving the lives of so many people.

I can appreciate that other members of this House have strong opposing views on the matter and, in the end, the vote of all members will reflect their personal views rather than by looking at the issue in the same way as the legislative review committee, led by the late Professor Lockhart, did. I should explain to the House what has influenced my own vote on this legislation. Like all members of the House, I have received letters and emails from a number of individuals and groups representing sufferers of diseases which it is hoped will be overcome by advances which could come from research which is presently banned in this country. I must admit that, like some other members of the House, our own personal experience has led to our determination to follow potential treatments, whenever they can be reasonably obtained.

There would be few members who have not been through the experience of seeing a close relative or friend suffer as a result of a disease for which a treatment or cure might flow from the type of research which would be allowed under this bill. If I am right, the majority of those will support this bill, if only for the reason that it will bring some hope to the lives of those sufferers and those close to them, but it is not a faint hope. This research offers better scientific understanding and better treatment for disorders such as type 1 diabetes, motor neurone disease and Parkinson’s disease. While it will take time and many present sufferers will not be able to receive the treatment in their lifetime, one of their dearest wishes is for others to avoid the suffering that they have endured. Those who will not support this bill—and I definitely do respect their reasons—will always have the option of refusing treatments which may flow from this research. They can continue to exercise their conscience and refuse treatments, but they should definitely not deny others access to treatments.

This leaves open the unanswered question of what the approach of any future government should be if research which is banned in Australia but allowed in another country should lead to a breakthrough in treatment. As we know, research involving somatic cell transfer is permitted under regulation in the United Kingdom, Singapore, Canada, New Zealand, Sweden, Belgium, Spain, Finland, Israel and the United States of America. If there were a treatment devised in one or more of those countries, would that treatment be regarded as the fruit of the poison tree and face a ban in Australia? I think the politics of that situation would compel any future government to allow such treatments—either that or face the situation where those sufferers able to afford it would travel overseas for treatment. So that leaves us with the dilemma of deciding whether to allow scientists in Australia to be part of the research and to be among the pioneers in the treatment of these diseases. Or will we be left in the waiting room, wondering if we should have taken a different course?

As I said earlier, many of us have our own personal experiences which have influenced our views on this issue, and my own experience is recent and has influenced me greatly. In July this year my father, Alan, died after more than five years, following his diagnosis with the terrible Huntington’s disease. When he was first diagnosed with Huntington’s, he made the comment that he would rather have been diagnosed with cancer. When I heard that remark from my dad, my first thought was that he was so, so wrong, and I told him so. But, having seen my father deteriorate over those five years, I now wonder if he was right—and, Dad, I think you were right.

He was a man who served his country in the Air Force, a man who had a distinguished career at the University of Sydney, a man who served his community as a councillor on Parramatta City Council, a man whom you respected as a father and a man who was greatly loved. When you stand by and watch someone like that deteriorate day by day—from needing his food prepared and, later, when it became impossible for him to be cared for in the family home, being placed in nursing home care—and when you see the toll that Huntington’s takes on a person, you are definitely left asking if anything can be done to help those who suffer from this terrible disease.

Research that may be allowed under the proposals in this legislation may lead to some discovery which could give a ray of hope to those suffering from Huntington’s and other disorders. While that may not help those currently suffering, it will give them the hope that, in future, others will not be forced to suffer as they have suffered, and this is especially true of Huntington’s. It is a genetic disorder which is passed on with a 50 per cent probability. If, like me, you have a parent who has Huntington’s, there is a fifty-fifty chance that you will have the disease, and that is the thought that I have lived with in recent years.

When my father was first diagnosed with Huntington’s, my sister took immediate steps to be tested at Westmead Hospital. It was found that she did not have the disease, and that came as a great relief to her. But in my case it was a difficult decision. I have two children, so if I had the disease there was a high probability that at least one of my children would have Huntington’s. So for four years I anguished over whether I should have the test. If I were to have the test and were found to have the disease, it would definitely alter my life and the lives of my children from that day on. If I were found not to have Huntington’s, it would be a great relief for me and for my children. It was a very difficult decision to make 

When I finally decided to have the test, it was one of the most traumatic times in my life. Having seen the terrible effects of the disease on my father, you can imagine how I felt at the prospect of being told that I had the disease and that I would need to tell my children that they may also have the disease. When I was given the results, to my great relief I found that I do not have Huntington’s; but the thought that the result could have been different is never far from my mind. What would I be like today if the result had been positive? What future would I have to live for if I were destined to suffer the ravages of Huntington’s disease? Would I feel guilt at the thought that my children and grandchild, Liam, may have inherited the disease from me?

In all of this there was only one glimmer of hope, and I can imagine that it is the same for the hundreds of Australians diagnosed with Huntington’s disease. That faint glimmer of hope is that scientific research may one day find a way of treating Huntington’s and even be able to prevent its transmission to future generations. So, Mr Deputy Speaker, you may be able to understand why I could not slam shut the door that may lead to treatments that prevent the ravages of diseases like Huntington’s.

There are many thousands of sufferers of diseases such as motor neurone disease, Parkinson’s disease, type 1 diabetes and many other disorders. Discovery may come too late to help those in the advanced stages of these diseases, but I am sure that I speak for those sufferers in asking that we keep the door open to research which may one day lead to a cure or treatment of their disorder. Their hope is not for themselves but, knowing the terrible effects of those disorders, their fond hope is that in a future world no-one need suffer as they have and that, even if it is only in a small way, through their suffering, future generations may be free of these diseases. So the legislation has my wholehearted support.

I can understand that some members and, indeed, many Australians have reservations; I can respect that. But having faced the prospect of having my own life and the lives of my children affected by Huntington’s disease, I cast my vote today for hope. I am definitely still left with my Christian belief that it is right for mankind to seek ways to cure the sick and heal the infirm: these are the noblest of human endeavours. This legislation, which allows research under strict controls, gives hope to thousands and thousands of Australian men, women and children. The door of hope should not be slammed shut by suspicion, fear and ignorance.

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