Josh Burns (Macnamara, Australian Labor Party) Share this | Link to this | Hansard source

BURNS () (): I move:

That this House:

(1) notes:

(a) the field of genetics has great potential to improve medicine and public health through enabling diagnosis, prevention and early treatment of disease;

(b) that increasingly, genetic information is used in routine patient care to identify individuals at risk for medically actionable conditions, and early knowledge of this risk can allow at-risk individuals to take preventive steps to reduce their risk or, in some cases, avoid developing the associated disease altogether;

(c) the current ability of the life insurance industry to legally use genetic test results in underwriting can lead to discrimination;

(d) that insurance discrimination fears can also act as a barrier, by deterring people from having potentially life-saving genetic testing that could match them to tailored interventions and treatments, as well as from participation in genetic research; and

(e) that numerous other countries have prohibited the use of genetic test results to discriminate against individuals in insurance underwriting;

(2) acknowledges that:

(a) in 2018, the Joint Parliamentary Committee on Corporations and Financial Services' inquiry into the life insurance industry made recommendations relating to the use of genetic test results in life insurance underwriting, including consideration of a moratorium and potentially further legislative action or another form of regulation banning or limiting the use of predictive genetic information by the life insurance industry;

(b) in 2019, the Financial Services Council introduced a partial moratorium restricting member life insurance companies from requiring applicants to disclose or using applicants' genetic test results for policies below certain financial limits, which is self-regulation by industry with no government oversight; and

(c) the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project was funded by the Government from 2020-2023 to investigate effectiveness of the moratorium as a regulatory solution to genetic discrimination in Australian life insurance, and found that discrimination fears continue to deter individuals from having genetic testing, and that the moratorium is inadequate to address and prevent genetic discrimination in life insurance;

(3) recognises the invaluable work of Dr Jane Tiller, Project lead, Monash University, and the investigator team in preparing the comprehensive A-GLIMMER Project report, as well as the project's collaborators, patient/consumer and supporter groups, and the many individuals who participated in the research studies completed as part of the project; and

(4) calls on the Government to consider policy changes to address and prevent genetic discrimination in life insurance and assist patients in receiving lifesaving medical care.

I am pleased to rise and speak on this important motion. Many common illnesses, including potentially life-threatening ones, are strongly influenced by genetic factors. It has long been common knowledge that some medical conditions such as cancer, stroke and haemophilia tend to run in families, and we now know that this is due to a genetic susceptibility to a particular disease being passed from one generation to another. This means that it is possible to determine whether a person is likely to be susceptible to a particular condition by means of genetic testing.

Advances in medical technology and decreasing costs have resulted in a rapid expansion in the scope, ability and use of genetic testing. Once at the frontier of medical research, this technology is set to become part of mainstream health care if it hasn't already done so. This means, for example, that it is possible to screen women, particularly women with a family history of breast cancer, for mutation of the BRCA gene which gives rise to the breast cancer type 1 susceptibility protein and increases the risk of breast cancer. This allows pre-emptive measures to be taken which will reduce the likelihood of that risk becoming a reality.

This technology has the potential to save many lives and it should be welcomed, but, in the case of genetic testing, the issue raised is the possibility of discrimination against people found to have a genetic predisposition to a particular medical condition. The motion before us today discusses one particular issue: the impact of genetic testing on the availability of life insurance—specifically, the fact that a positive genetic test may result adversely in a person's ability to secure a life insurance policy.

Currently, life insurance companies can legally require applicants to disclose all genetic test results. No doubt, this seems reasonable to the insurance companies, but it does raise some serious issues. First, it enables insurers to decide what a particular genetic test result means in terms of risk. Given the lack of data for many genetic conditions, this will result in insurers taking a more restrictive attitude to medical evidence warrants. To take the example I gave above, it may well lead to an insurer refusing to cover any woman who carries the BRCA mutation. Second, insurers are not required to give the reasons for their decision to decline insurance or charge higher premiums. Currently, the insurance policy is developed by the Financial Services Council, with no government oversight or transparency to consumers. There is currently no easy process for individuals to challenge adverse decisions. Third, and most importantly, there is an increase in evidence that fears of life insurance discrimination are deterring people from having genetic testing that could literally save their lives.

In 2018, the Parliamentary Joint Committee on Corporations and Financial Services made bipartisan recommendations supporting a ban on the use of genetic results by life insurance and suggested a watching brief by government to consider whether legislation would be required. The industry introduced a partial moratorium in 2019. Despite this, it is my belief that stronger intervention is still required, one which will provide protection that cannot arbitrarily be removed by the insurance industry. In particular, it is relevant to the community of Macnamara because the Ashkenazi Jewish community has a higher prevalence of several genetic disorders, and Jewish families across my electorate have the potential to greatly benefit from a ban on generic discrimination. This will allow people to make decisions about genetic testing on the basis of their health needs, not financial fears. This problem is already affecting many people.

In July, I met Dwayne and Judy Honor, who have two sons. When one son was tested and found to have inherited Judy's genetic predisposition to bowel cancer, he faced insurance discrimination despite taking preventive measures to avoid developing cancer. Her other son then made the difficult choice not to get genetically tested. The fear of being denied life insurance is leading people to run an increased risk of life-threatening diseases. Families should not have to make these choices. It is unacceptable to me, and I am sure it is unacceptable to many in this House.

Finally, I want to recognise the invaluable work of Dr Jane Tiller from Monash University, who is leading research and advocacy on this issue. I would not be standing here if it wasn't for Jane and her team, and I know that many other members feel the same. We don't want a situation where people are choosing between whether or not they get the lifesaving health care they need or whether they could potentially be discriminated against. We need to clean this up. I commend this motion to the House.

Alicia Payne (Canberra, Australian Labor Party) Share this | Link to this | Hansard source

Is the motion seconded?

Warren Entsch (Leichhardt, Liberal Party) Share this | Link to this | Hansard source

Yes. I want to add my voice to this issue of profound importance. It's an issue that merges the cutting edge of science of genetics with the fundamental principles of justice, fairness and empathy. The issue of genetic discrimination in life insurance is a dilemma that places Australia at a critical crossroads. The time to act is now. The field of genetics represents one of the most revolutionary advancements in modern medicine. Its power to diagnose, prevent and treat these diseases is unparalleled. It has the potential to identify individuals at risk of medically actionable conditions and even enable the prevention of certain diseases altogether. However, this remarkable promise is shattered by a grave concern that the use of genetic test results by the insurance industry, which, as we all expect, is likely to lead to wholesale discrimination. On the one hand, we have fantastic work with genetic testing underway and there is enormous potential to make marked improvements in the health of Australians. At the same time, there stands a very dark shadow looming over this bright promise.

To date, numerous nations have already taken the decisive step to prohibit the use of genetic test results as a means to discriminate against individuals in insurance underwriting. Similar nations to Australia, like Canada and the UK, have already enacted bans on insurers utilising genetic testing, but Australia, as a nation that has always strived to be at the forefront of human rights and equality, is tragically trailing behind in this race. Imagine a young mother deterred from genetic testing that could reveal a life-threatening condition for fear of discrimination. Think of families trapped in uncertainty, unable to take preventative measures because they cannot trust that the results won't be wielded against them. The likelihood of these scenarios could become commonplace and raises profound ethical questions about privacy, autonomy, the insurance industry's priorities and our responsibility to the Australian people.

We all know that the insurance industry is always trying to find ways to increase premiums and to mitigate claims. I fear that, if we do not restrict their ability to discriminate on the basis of genetics, their desires will be to get the better of them. The last thing we want is to see this country in ambiguity about self-regulation, leading to a situation where Australians are deterred from having potentially life-saving genetic testing. The existing industry moratorium is absolutely insufficient to protect consumers, and frankly we're leaving the foxes in the henhouse. A self-regulated solution is unstable and uncertain, and it can be rescinded at any moment, leaving Australians in a perpetual state of fear and distrust towards genetic testing. When the consequences of getting it wrong are so serious, I do not believe that we can proceed without a legislated framework.

I'd like to take a moment to give praise, again, like the previous speaker, to Dr Jane Tiller at Monash University and her team for their valuable research and for advocating so very, very strongly on these issues. I can assure you that the work she has done has educated me in many ways on the serious concerns that we, as a country, should have on this issue.

As we move forward, we must engage with the community, the insurance industry and the scientific community to learn from the experience of other countries and to craft laws that reflect our unique context. Our future depends on a vision where genetic information is embraced without fear, where medicine advances and lives are saved. The stakes are high, and I'm sure the Australian commitment to fairness, justice and securing the wellbeing of one another will prevail. Our nation stands at a crossroads, and the path we choose will shape the destiny of countless lives. Let us act without delay and ensure that all Australians can receive the life-saving medical care they need free from any level of discrimination.

Tania Lawrence (Hasluck, Australian Labor Party) Share this | Link to this | Hansard source

Genetic research offers amazing advances in the treatment of disease. A few years ago Melbourne University reported genetic research that identified vulnerability in lymphoma cells that might lead to a new approach for cancer treatment. In March this year, Minister Butler announced that Monash University will receive $50 million through the medical research fund for the mitochondrial donation pilot program. Mitochondrial disease is debilitating and potentially fatal with significant impacts felt by both patients and their families. The funding will support research and ongoing monitoring of trial participants, including children.

In August, Duchenne Australia held an event here at the Australian parliament, which my office attended. Duchenne muscular dystrophy, or DMD, is the biggest genetic killer of boys. As for many genetic and other conditions, early diagnosis and treatment can make a world of difference to a child's life and a family's distress. For DMD, muscle can't be put back, but treatment can slow down deterioration. We want this sort of world-leading research and early treatment to occur in Australia. For genetic conditions, genetic screening is the obvious course, and genetic research is essential.

I thank the member for MacNamara for bringing this motion before the parliament. It is not a new issue, but the motion is timely as it is important now for the government to consider, in the lead-up to the end date of the current insurance industry moratorium, whether the self-regulation in this space is sufficient or whether legislative boundaries will better achieve the ends that we agree are necessary.

An insurance environment where personal screening is deterred by economic consequences or where engagement in genetic research is deterred in the same way is wholly problematic. We need to ensure that there is no chilling effect. We can multiply the examples I've referred to already by any number of conditions where early knowledge and better research will make a world of difference. I know that people across the country and in my own electorate of Hasluck are glad for the research happening here. I know they are happy about the recently extended funding of newborn testing, for example, to cover a much more extensive range of conditions, for knowledge is power. The government needs to ensure that that knowledge does not lead to disadvantage or discrimination.

I met with Dr Jane Tiller of Monash University in May this year, to hear about her work and the Australian genetics and life insurance moratorium:monitoring the effectiveness and response study, referred to as the A-GLIMMER report. The A-GLIMMER report, delivered earlier this year, found that genetic discrimination in life insurance still occurs and deters people from seeking testing and engaging in genetic research.

I want to share an example of disability advocate Anwen Handmer, who is also my sister-in-law. She states: 'Gene therapy is the very cliff face of medicine for us all—medicine which is not condition specific but gene specific.' Right now, a bunch of Anwen's cells are in the lab as Professors Sue Fletcher and Steve Wilton test an application which has already had a huge success with rare diseases. Anwen states that at present her cells are being used to test exon skipping therapy on exon 32 of one of her dysferlin genes. She has dysferlinopathy because of mutations in the DNA of both copies of her dysferlin gene. She says:

If successful, the treatment will provide me with one effective, functioning dysferlin gene. This means I will be able to produce dysferlin, a protein which repairs fast twitch muscle after deterioration associated with normal muscle use. Progression of the disease would halt and regeneration of some muscle tissue is likely. It is not a cure, but it's a very, very much needed treatment.

She goes on to say:

The magical thing is that the same application targeting exon 32 on my dysferlin gene will work for someone with an entirely different condition—if that condition is caused by a mutation on exon 32 of the respective gene—it could be Motor Neurone Disease or Leukodystrophy or cancer or one of any number of diseases, rare or otherwise. Knowing the genetic sequence behind the condition will be as crucial to treatment as it is to diagnosis.

The A-GLIMMER report, though, casts doubt upon the efficacy of the industry's self-regulation. Whilst the insurance industry appears happy with the moratorium and code and, presumably, would like to have it extended, I'm confident that the government will find a fair course to chart to ensure that families, researchers and the insurance industry can come to a happy medium that protects genetic research for the future.

Monique Ryan (Kooyong, Independent) Share this | Link to this | Hansard source

I rise also to support this motion. Genetic information is now used routinely in patient care to diagnose conditions, guide choice and dosage of medications, and to assess our response to therapies. It can allow at-risk individuals to take preventive steps to reduce their risk or, in some cases, avoid developing diseases altogether. It has the potential to change all aspects of how we practise medicine, effectively, economically and compassionately—optimising prescribing, preventing side-effects and facilitating early diagnosis. But we have to have the confidence to engage with genetic testing to know that it won't cost us or our families the ability to insure ourselves either now or in the future.

Over the past two generations, we have experienced an extraordinarily rapid evolution in the scope and complexity of the genetic testing undertaken every day in the clinics and hospitals of this country. We've adapted quickly, and we've been able to remain at the forefront of the uptake of this technology, globally. The issue that we address today is that our life insurance industry can, though, at this point, legally use the results of genetic testing in a way which is actively discriminatory. When people fear discrimination by insurers, they avoid genetic testing. This fear causes delays in diagnosis and in preventive and curative treatment. It has a significant negative impact on patient outcomes.

My constituent in Kooyong, Professor Martin Delatycki, reported seeing this effect in the DNA Screen study, an MRFF funded population-level DNA screening pilot study which tested young people for genetic risk factors for cancer and heart disease. Despite having no family history of the disease, many young people declined to participate in that research once they discovered that its results could impact their ability to gain life insurance in the future. I, myself, was an investigator on a previous MRFF study which assessed the potential for ultra-rapid genomic testing for newborn babies with life-limiting rare diseases. The genetic counselling around that study, which was being provided to parents of babies who were critically ill, was more challenging because of the potential implications of those diagnoses, not just for the patients and parents but also for other family members. Imagine trying to deal with that sort of discussion when you have a newborn baby in intensive care.

In 2018 the joint parliamentary committee's inquiry recommended consideration of a moratorium and further legislative action limiting the use of predictive genetic information by the life insurance industry. In 2019 the Financial Services Council introduced a partial moratorium, restricting member life insurance companies from requiring applicants to disclose genetic testing results and from using those results for policies, but only below certain financial limits. This was an industry regulated policy. It had no government oversight. It was plainly inadequate, and the degree to which it has been enforced is unclear. A recent federally funded study assessing the effectiveness of that moratorium, the A-GLIMMER project, found that fear of genetic discrimination is still deterring individuals from having genetic testing in this country.

The easiest and simplest way to address this issue is via an amendment to the Disability Discrimination Act 1992. This act currently prohibits discrimination on grounds including genetic status but provides an exemption for risk rated insurers under its section 46. Amendments to remove that exemption as it applies to genetic results would be a simple and effective way of achieving prohibition without requiring a whole new standalone act, so I ask the Attorney-General to implement this important amendment in order to build public trust in genetics and genomics and to support best-practice medical care for all Australians. It is urgent that we do this now, when we're on the cusp of a time when DNA testing is becoming an intrinsic part of routine medical diagnosis and treatment.

I call on the Albanese government to address and prevent genetic discrimination in life insurance in Australia. Doing so will right wrongs. It will remove injustice and assist all Australians to access the world standard life-saving medical care that our medical system wants to provide and that Australians deserve. I commend the motion to the House.

Louise Miller-Frost (Boothby, Australian Labor Party) Share this | Link to this | Hansard source

I start by commending the member for Macnamara for his commitment to ensuring we have a fair life insurance system, free from genetic discrimination. Many common life-threatening illnesses are influenced by genetic factors. Most commonly known are the cancers, but there are also autoimmune, degenerative and other conditions. Genetic and genomic health technology can be used to determine whether a person is likely to develop genetic conditions later in life. This technology is reshaping the ways in which we diagnose, treat, and—perhaps most importantly—prevent heritable conditions. It has the potential to save lives.

However, undergoing genetic testing does carry a risk, and it's one that might not be obvious. There is a risk that undergoing this testing could lead to discrimination in life insurance products. A positive genetic test which identifies that somebody may be at higher risk of developing a condition later in life may adversely affect that person's ability to secure a life insurance policy. This is completely counterintuitive to the concept of early diagnosis and treatment. The metaphor of the fence at the top of the cliff versus the ambulance at the bottom is one that's often used in the health sector. The fence at the top stops someone falling off the cliff and needing the ambulance. Genetic testing is that fence at the top of the cliff.

Early identification of an increased risk of developing a condition empowers the person and their treating team to make rational decisions to limit the risk. The most often talked about are perhaps the BRCA1 and BRCA2 genetic mutations that put women at higher risk of breast or ovarian cancer. Knowing that she has this gene mutation enables a woman to consider options such as more frequent monitoring or even removal of the breasts and ovaries.

Fear of having a genetic test might impact your ability to get life insurance or fear that it might increase the cost of life insurance works against the patient finding out early and being able to do something about it. In Australia, there is currently an industry-led moratorium that has been in place since 2019. The moratorium says that the insurance companies will allow people to take out life insurance cover up to certain limits without having to disclose a genetic test. However Monash University's A-GLIMMER report raises several issues with this moratorium—and credit to Dr Jane Tiller for her work in this area. The issues include that people may be dissuaded from getting a genetic test for fear they would be discriminated against in their life insurance policies and also that the moratorium is industry self-regulated and that this provides little certainty for consumers.

Insurers do not need to provide reasons for their decisions to charge higher premiums or decline insurance. They do not need to advise if a genetic test may have been a factor. An insurer's assessment of their financial risk may be at odds with a medical assessment of risk. Ironically, by discouraging consumers from accessing genetic testing and early intervention, the insurers may in fact end up paying out more as their consumers get sicker or die from conditions that may have been preventable if they'd been empowered to get that prevention. Currently there is no government oversight of this industry-led moratorium and there is no process for individuals to challenge decisions that may have been influenced by genetic test results. The increasing evidence that fear of life insurance discrimination is discouraging people from having genetic testing is very concerning. Prevention and early intervention is better than cure, and the fear—or the reality—of discrimination is removing the ability to access that prevention and early intervention. It seems evident that the current moratorium is doing little to reassure people.

In 2018 the Parliamentary Joint Committee on Corporations and Financial Services recommended a ban on the use of genetic results by life insurers. There is already some form of prohibition or ban in place in New Zealand, the UK, Canada, Europe and the US, and this kind of regulation could be a vital tool for Australia as well. We must ensure that our citizens have access to life-saving testing, and we need to create a system that allows and encourages our citizens to utilise this life-saving measure freely and without fear of future discrimination. Australians should be able to make these decisions based on their health needs, not financial ones, and we have the opportunity to make that a reality.

It's obviously in the interests of insurance companies to increase premiums and to limit or prevent claims, but this is not in the interests of Australian consumers or of Australia as a whole, and self-regulation is clearly not sufficient to protect our interests. I believe legislation is required and I commend the member for Macnamara for this important private member's bill.

Rebekha Sharkie (Mayo, Centre Alliance) Share this | Link to this | Hansard source

Advances in medical science and health care have led to greater average life expectancy and significant improvements to our quality of life. In particular, the field of genetics and genetic testing has enabled early detection of serious conditions such as cancer and heart disease, and such intervention has saved thousands of lives. However, for some these scientific advances have become a double-edged sword, as many of the previous speakers have said. This is a consequence of our legislative environment not keeping up with our scientific achievements. Australians may take advantage of genetic testing. It saves lives, and that's one edge of the sword. The other edge is that they may be discriminated against if they seek life insurance from life insurance companies that use genetic information in underwriting, consequently denying or increasing the cost of cover determined on those genetic results. The fear of genetic discrimination, particularly within families in which inherited disease is prevalent, is now deterring people from accessing that genetic testing.

So what a ridiculous conundrum we have. We have genetic testing technology which can save thousands of lives, but many people say that they're reluctant to access testing in case it makes them uninsurable or increases the cost of their insurance. Australians should not have to make these life or death decisions because of their genetics, and they should not be discriminated against because of their genetics. We have a legislative failure in this country which consequently allows insurance companies to actively discriminate against policyholders or potential policyholders based on genetic information. That's not how insurance should be. It's not how it's supposed to work. As the field of genetics continues to improve, this perverse situation will only worsen. Our advancements in science should not come at the expense of the individual's ability to obtain insurance products.

This is not the first time in this place that we've heard calls to act. We've got this motion before the Chamber—and I thank the member for putting it forward—but we had a Joint Parliamentary Committee on Corporations and Financial Services inquiry into this in 2018. Five years ago this was raised as a big issue. In 2019, the Financial Services Council introduced a partial self-regulated moratorium. The word 'self-regulated' always makes me concerned. This is commendable, but the moratorium does not provide the level of protection recommended by the joint parliamentary committee report. When we look into this, we find that, compared to other countries, we are laggards. Canada prohibits any entity, including insurers, from requesting or using genetic tests in the provision of goods and services. Similarly, the US prohibits health insurers or employers from using genetic information and has done so since 2006. We certainly don't hold up the USA as a beacon of virtue with respect to health cover. The UK has prohibited the use of genetic testing results across many insurance products, including travel, motor and private health insurance since 2001. Here we are in Australia in 2023, and we lack any similar legislative protections.

Australia has obligations under its human rights agreements, and it has obligations to its citizens. Honestly, we waste so much time in this place. Five years ago we had findings from an inquiry. Since then we've had two different governments, and they have failed to act on this. The parliament doesn't sit long enough to get through all of the work, so we need to be judicious with our time in this place, and we need to ensure that issues such as this that have a material effect on people are given priority. I would say to the government: If not now, then when? When will you act on this? We've known this for years. Let's make this happen. We can't afford to do this to our fellow citizens. It's an easy fix. The rest of the world is ahead of us. Let's catch up.

Alicia Payne (Canberra, Australian Labor Party) Share this | Link to this | Hansard source

The time allotted for this debate has expired. The debate is adjourned, and the resumption of the debate will be made an order of the day for the next sitting.