Mike Freelander (Macarthur, Australian Labor Party) Share this | Hansard source

Genetics has come a long way since Mendel and his peas in the 1860s, and it has been absolutely remarkable, in my medical lifetime, to see the advances in genetics. There was slow progress for over a hundred years until we got to the Human Genome Project, which really opened up the field of medical genetics to all of us in the 1990s and 2000s. The Human Genome Project was started in October 1990, and it was projected to take 15 to 20 years. In fact, it was done after 13 years, so it was finished early. This then opened up the field of human genomics to medical researchers and scientific researchers, which led to a tsunami of new treatments and new medical interventions in the last few years.

Just as an example, when I started my training as a paediatrician, about 90 per cent of people who had intellectual handicaps were described as being 'idiopathic'—in other words, no cause found. That is now totally the opposite, where 10 to 15 per cent were described as having an idiopathic intellectual handicap and over 90 per cent now have a cause, mostly genetic. We've done some remarkable things. We now have treatments for some of the previously fatal genetic disorders of childhood, for example, spinal muscular atrophy, which, in its most severe form, usually caused death by age 3. It now has a curative treatment available because of genetic intervention. We are doing remarkable things.

We know there are many inherited disorders that can cause disability in children that can be picked up by newborn screening. Now, over 40 are routinely tested for, and that is a remarkable change since my beginnings as a paediatrician, when only three or four conditions were tested for. There are remarkable differences, remarkable changes and medical advances that are leading to better health care and leading to good quality of life for many people who previously would have been quite disabled.

However, with that, there have come concerns about the availability of genetic information and how that is used by different organisations, including insurance companies, financial institutions et cetera. This is expanding very rapidly. We know that there are risk genes for a whole range of common disorders—diabetes, heart disease, stroke, cardiovascular disease.

Recently I heard from a group led by a paediatric colleague of mine, Srinivasan, who's an endocrinologist at the children's hospital, about a condition called familial hypercholesterolaemia. This is a condition where cholesterol is so high that it causes very early onset cardiovascular disease and heart attacks and sometimes death in the 20s and 30s. This can be prevented by treatment and can be picked up in very early childhood. There are lots of at-risk genes for a whole range of disorders. Many people have these tests done or have relatives who have these tests done. Through family history, that can affect people even though they may never have had a test done and may until that time be unaware that they are at risk of certain diseases.

We recently had a situation in Sydney at the Royal North Shore Hospital fertility IVF clinic, which, some years ago, made a mistake and inadvertently transferred two embryos to a mother who was not the genetic mother. Only recently, because of genetic screening through commercial program, were these twins found to be not the biological children of the person they thought was their mother for over 30 years. Genetics is remarkable in its advances, and it's a cascading situation where you're seeing more and more advances, but it also comes with some dangers if that information is not in the right hands.

This legislation delivers on the government's commitment to ban the use of adverse genetic test results in life insurance. We know already that some people are avoiding getting testing done because of concerns about that information falling into hands that could use it to financially affect them. I think there are other possibilities as well that we need to be thinking about. If this information gets into the hands of a prospective employer, it may sometimes affect their willingness to employ people, so we need to be very careful about how genetic information is allowed to be given to other people. Sometimes it may well be because of careful family histories that people are implicated as being at risk despite the fact that they may never have had a test done.

There are also concerns about access to genetic counselling and access to the correct information for many people who may have at-risk genetic profiles. I know that the government is working very strongly on that issue to make sure that people, if they do have at risk genes identified, are able to access genetic information. Before I go any further, I'd like to congratulate Professor Jane Tiller from Monash University for the work that she has done. She's here now and it's great to have her here. This project has taken so much time over such a long period of time, and Jane has been the one person who has never failed in her commitment to the cause. I congratulate her and thank her from the bottom of my heart for making sure that we were all focused on getting this bill through the House.

I would like to also thank my friend and colleague Stephen Jones for the efforts that he put in. It did take a long period of time to make sure that we were using the right information and that everyone was aware of the necessity for this bill and I thank Stephen for that. It's also fantastic to have in the House today Daniel Mulino, the Assistant Treasurer. I don't want to push him to think that I'm ingratiating myself with him, but he has been like a dog with a bone and has been the one person that has pushed this through the parliament, and he deserves the highest congratulations and thanks for what he has done.

There is clearly a long list of other people in the genetics community—genetics Australia et cetera have done an incredible job. My friend and colleague Mimi Berman, the previous head of genetics Australia, has been fantastic and really tireless in making sure that this legislation was to the fore. Kathy North from Genomics Australia has been a really fantastic advocate as well. And many of my paediatric colleagues have done a lot of work in this space and are really grateful that the government has brought this legislation forward.

Genetic risk is, of course, risk; it's not a certainty. But it is important that people can have certainty, when they do get genetic testing, that the information will only be in the hands of people who want their good, not other organisations who may use it for financial gain et cetera. The Treasury's analysis is clear that some people are holding back from essential testing and even from participating in research projects because of concerns about their genetic information being used against them. That is not good enough. This government has been really focused on making sure that there is certainty, and this legislation will give that in letting Australians know that their genetic information will be used for their good and no-one else's in the first instance. Their decision to undertake genetic testing must be made on a medical basis. People must be sure that it won't jeopardise their access to life insurance or force them into more expensive or restrictive policies, and it should not affect other insurance.

These reforms will support greater uptake of genetic testing and, in particular, participating in medical research. We have a government and a health minister that are focused on supporting our medical research community. That means better prevention, earlier treatment and, really, stronger and more focused research that will improve public health across the country and allow us to participate in international programs and take advantage of advances in scientific knowledge that will benefit every Australian.

This legislation has been carefully designed, and it has taken some time. Once again, Minister Mulino needs to be congratulated for making sure that that's the case. Individuals can volunteer their test results if they've given their consent to other organisations, and insurance providers can still use family histories and diagnoses to make sure that policies are properly risk rated. We're delivering fairness, we're delivering certainty, and we're delivering knowledge to the people who can best use it in a healthcare setting. We're acting because vulnerable Australians deserve a system that supports their health decisions, and we are acting because this government is focused on 21st-century health care that not only provides protections for people but also provides incredibly strong public health policy. It will make sure that people won't feel disadvantaged if they do undertake genetic testing or if their other family members undertake genetic testing. Genetic testing, we know, can save lives and improve quality of life, and, certainly, in the paediatric space, it can help in a whole range of things, including family planning.

The bill makes amendments to the Insurance Contracts Act to implement the ban and related amendments to the Disability Discrimination Act to make sure Australia is aligned with antidiscrimination laws. It makes sure that genetic testing can still be used to improve quality of life, save lives and support medical researchers to prevent, treat and monitor a whole range of disorders, including inherited metabolic disorders, genetic disorders and, in some cases, genetically based cancers and cancer predispositions. And, of course, in families of Ashkenazi Jewish origin, like mine, they have a higher risk of certain cancers if they carry the so-called BRCA genes, the BRCA1 and BRCA2 genes. Many of us, without even knowing that we carry at-risk genes, can be reassured that, if we do get tested, the information will be used in the right way.

Across the parliament there's pretty uniform agreement on this legislation, and this is something the whole parliament can be congratulated on. It's one of the most important pieces of legislation to pass through this parliament in the 10 years I've been here; I really do feel that. This will open the way for further advances in health care based on genomics that we know will be coming towards us as a tsunami in the next few years. The people that have promoted this bill—I'll mention Jane Tiller again, from Monash University, and Stephen Jones, Daniel Mulino and many other members of parliament that we've heard speak—need to be proud of the fact that this parliament is looking to the future in health care by introducing this legislation. I congratulate my paediatric colleague Monique Ryan, who's here today, who I know has also been a very strong supporter of this legislation, as have many other members of parliament—too many to mention.

We should all be proud that this is something we are doing that will advance health care for many years in the future in Australia. It's great to be a member of a parliament that can make this happen to benefit all Australians, and to be involved in 21st century health care around the world. I'm proud to be here on the day that this legislation is being debated. I'm wearing the badge of Genetics Australia, and I'm proud to do that. I thank all my colleagues who have supported this legislation.

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