House debates

Monday, 27 November 2023

Private Members' Business

Genetic Research

11:28 am

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

I move:

That this House:

(1) notes the:

(a) increasing importance of research in the field of genetics in advancing our understanding of better treatments and healthcare policy for the betterment of patients; and

(b) opportunities provided by genetic research and that the findings from life-changing treatments should be regarded as ways and means to provide targeted treatments for patients suffering from disorders such as epilepsy, auto-immune diseases, cancers, heart disease and many others;

(2) acknowledges:

(a) with the rush of new information and understanding of genetic treatments, comes the responsibility to protect the privacy of individuals from being exploited by third parties;

(b) these are imperative in protecting the field of genetics from exploitation and limiting the risk of patient records and disorders being used in discriminatory manners by third parties, such as the life insurance industry, whose current ability to use genetic test results in assessing applications and claims has led to great frustration and should be stopped; and

(c) this concern with privacy must not damage research in the genetics field and the benefits that advances in treatments provide, however, it is in the interest of this field that individuals are not discouraged from sharing information of their disorders; and

(3) calls on Commonwealth, state and territory governments to work towards legislation that will restrict third party access to genetic information and ensure that the only party able to choose when and how to disclose genetic information is the individual themselves.

I am thankful for the opportunity to speak on this very important topic. It's a growing issue that we are facing across the world. I'd like to thank those who'll be speaking on the motion and also Dr Jane Tiller from Monash University, for her passionate efforts to have this issue brought to this parliament's attention and for her research work in advancing this cause nationwide.

Genetic testing provides lifesaving information. It can also provide life-altering information to groups such as insurers and employers et cetera that can be used against individuals and their families, which can impede not only their recovery and the healing process but also their financial wellbeing and even their employment wellbeing.

I've seen in my own field of paediatrics an explosion in the ability to diagnose genetic conditions, often to very great benefit. For example, there's a condition called spinal muscular atrophy, which was universally fatal, usually before the age of three, and it's now diagnosable in the neonatal period, and treatment is being offered that is allowing normal development in these children. This is a remarkable improvement. Carrier screening is also being offered to these families. It may enable people to live normal lives when previously they couldn't.

However, in spite of the enormous advantages, this information can provide great detriment to people diagnosed with genetic conditions, and the ability to diagnose these conditions is increasing all the time. Insurers can increase premium costs if people are now recognised as having certain genetic conditions, and they're expanding all the time. We're now recognising genetic conditions for sudden death, cardiovascular disease and dementia. We know that these can be used by insurance companies, employers and educators to restrict people's access to employment, benefits and financial success. It's an unfair and an ugly use of genetic testing, and this must be stopped. We should not allow genetic testing results to be used by insurance companies, employers and a whole range of people to discriminate against individuals and their families. No-one can choose their genes, and we've always offered insurance on the basis of community risk, and we've covered people accordingly for things like health insurance et cetera. However, there now is the potential for this information to be used against people's interest, rather than for their benefit. It greatly concerns me.

This is a major concern around the world, and many countries have already legislated to prevent companies using genetic information to discriminate against people. It's important that this parliament acts to protect Australian consumers and people now and into the future. This is why legislative prohibition on insurers using genetic results to discriminate against people is urgently required. It's only through amending legislation to give patients and consumers certainty about the ongoing protection of their genetic information that genetic information can benefit the community. In Canada, legislation completely bans the use of genetic results in any goods or service offering, including insurance. Only if an individual chooses to provide their genetic test results can an insurer or other agencies, such as an employer, act. It's important to stress that it's the individual's choice to release that information. Patient privacy is paramount and must not be shopped around by insurers and risk assessors et cetera. No Australian should be discriminated against due to their genetic test results. I want Australians to have peace of mind about this, and it's important that this parliament acts.

Individual health and wellbeing are too important to be sidelined and managed by a group of financiers and insurance agents. Our healthcare system cannot have individuals go without these test results because they're worried about the implications of what might happen to them or their families. And it's important to note that genetic information affects not just the individual but their families, and it's very important that they are protected as well.

I thank the minister for health and the Prime Minister for the recent announcement of $66 million to be invested into genomics research, but that should be tempered by an understanding of the risks of those results to people suffering from a number of serious diseases and some chronic conditions. Genomics medicine is revolutionising health care; I've seen that in my own practice, but we must protect people who suffer from these genetic conditions.

Photo of Alicia PayneAlicia Payne (Canberra, Australian Labor Party) Share this | | Hansard source

Is the motion seconded?

Photo of Zaneta MascarenhasZaneta Mascarenhas (Swan, Australian Labor Party) Share this | | Hansard source

I second the motion and reserve my right to speak.

1:34 pm

Photo of Rebekha SharkieRebekha Sharkie (Mayo, Centre Alliance) Share this | | Hansard source

) ( ): I want to thank the member for Macarthur for the opportunity to acknowledge that genetic testing is an absolute game changer. It can enable early diagnosis, prevention and treatment of disease. From my family's experience, I know that while we all expect that new baby to arrive safely and healthy, sometimes life doesn't follow those plans, and not all families have access to genetic testing before their baby arrives. That's what my family found out. It can take months or, in many cases, years following the birth to obtain a diagnosis for a genetic disorder, particularly if it's incredibly rare. Even when genetic disorders are life-limiting or have a degenerative effect, the earlier you can have an assessment—we're learning every day how important it is to have early intervention and treatment. This can make access to genetic testing, antenatal and postnatal, even more vital.

It also draws attention to the increasingly vital role of genetic counsellors in our healthcare workforce. I would like to recognise the genetic counsellors who came into Parliament House, I think it was in the last sitting week--sometimes, at this time of year, the sitting weeks blur. They do so much to support families and individuals dealing with genetic disorders. They help patients understand the risks and benefits of genetic testing and help patients understand what a positive or negative test can mean for them and their families.

My final point relates to privacy and the crossroads that Australia is at with respect to the sharing of genetic testing information. As has been pointed out by the member for Macarthur, some Australians feel discouraged by undertaking genetic testing because of potentially adverse implications for life insurance and even employment prospects. I've heard from some people with genetic conditions that their children or other family members are actually deciding to postpone or avoid genetic testing altogether, which is really concerning—notwithstanding the health benefits that testing could bring—until after because of those potential life insurance impacts. This shows how worried people are about the implications of disclosing genetic test results for their careers, for their livelihoods and for insurance.

We need to enable people to put their health first and only think about the health implications and not the possible financial implications. We need people to embrace genetic testing, which could be life-changing or even life-saving, without being made to disclose the results to potential employers or insurers. In the United Kingdom, there is a moratorium banning the use of genetic testing and underwriting life insurance. However, presently in Australia, the life insurance sector can use genetic test results in underwriting. In 2019, Australia's peak life insurance body implemented only a partial moratorium requiring disclosure of genetic test results above set limits of $500,000 for death or permanent disability and lower limits in other areas. This is not subject to government oversight.

I'm pleased that the government has released a consultation paper today launching a review of Australia's regulatory framework for the use of genetic testing in life insurance underwriting. A ban would be in line with the recommendations of the 2023 Australian genetics and life insurance moratorium: monitoring the effectiveness and response A-GLIMMER report. I've had the benefit of meeting with Dr Jane Tiller, one of the authors of this report, and Australians impacted by our nation's current lack of a ban on the use of genetic testing and life insurance underwriting. The report shows the lack of certainty for those impacted. I think we are seeing an effect with respect to health implications and people's access to health and medical support without having that safety net. I therefore encourage those with lived experience to participate in this government consultation, which is closing next year on 31 January.

I'm glad to hear that the Council of Australian Life Insurers, whose 19 members represent 99 per cent of the life insurance market and all reinsurers, recognise the important role of genetic testing, and I hope to see their full support for moves to ban the use of genetic testing in Australia for life insurance underwriting. This will give Australians greater peace of mind with respect to making these vital decisions. I'd like to close by just mentioning the great work of the member for Macarthur. I think it's fair to say that, through the topics that the member brings to the parliament, his expertise in all areas of medicine, health and ethics has made this parliament and debate richer.

11:40 am

Photo of Louise Miller-FrostLouise Miller-Frost (Boothby, Australian Labor Party) Share this | | Hansard source

I thank the member for Macarthur for moving this important motion. Genetic research is critical in improving the screening, early diagnosis and treatment of Australian patients. Genetics and genomics are reshaping clinical practice and changing the way we prevent, diagnose, treat and monitor a range of heritable conditions, cancer predisposition syndromes and rare cancers. But we know that some people are wary of undergoing genetic testing—they're either postponing or even avoiding it altogether—because of a perceived risk to privacy and the risks to accessing financial products such as life insurance.

Genetic testing and its legal implications cover three ministerial portfolios—obviously health, but also the Attorney-General in terms of privacy and Treasury in terms of the impact on the life insurance industry. The Albanese government is committed to the future of genetic research and testing for Australians. This is a health system and scientific frontier focusing on prevention and early intervention, and this is important for the health of Australians. On 18 November 2023, we announced $66 million for genomics research. A total of 25 projects will be funded by the government to conduct genomic research to assist in improving testing and diagnosis for many diseases. Each of these 25 projects will receive up to $3 million through the Medical Research Future Fund's Genomics Health Futures Mission. On 1 November, the Minister for Health and Aged Care announced new listings on the MBS for a range of genetic tests, valued at $148.5 million over the next four years.

Additionally, the government is consulting with states and territories on the development of a nationally cohesive approach to medical genomics, including the establishment of a new national genomics body. The government's consideration of this body will also be informed by an expert advisory group and an Aboriginal and Torres Strait Islander advisory group on health genomics. The Department of Health and Aged Care is monitoring developments in the fields of genetics, genetic testing and participation in medical research, and will continue to support the Treasury and Attorney-General's Department by providing advice on these matters.

Beyond the health portfolio, on 28 September 2023 the Australian government released its response to the Privacy Act review report. In its response to the review, the government committed to progressing work to enhance privacy provisions provided to individuals and to ensure Australian businesses have clarity about what information is covered by the Privacy Act and how best to protect this information. The government's response to the Privacy Act review is being led by the Attorney-General's Department. The Assistant Treasurer and Minister for Financial Services, the Hon. Stephen Jones MP, is responsible for the regulation of life insurance and is taking the lead on genetic discrimination in life insurance, including external consultation and examination of possible options.

In response to a parliamentary committee report in 2018, the Financial Services Council put a genetics moratorium in place to address disincentives to undertaking a genetic test. This is effectively industry self-regulation for products over a certain value. Monash University's A-GLIMMER report by Dr Jane Tiller measured the impact of the moratorium and was published in June 2023. It called for an amendment to the Disability Discrimination Act to prohibit the use of genetic or genomic test results to discriminate between applicants for risk rated insurance.

Assistant Minister Jones has today announced the release of a consultation paper on the use of genetic test results in life insurance underwriting. The consultation paper includes three options: no government intervention; legislating a complete or partial ban—and this would align with the report's recommendation—or legislating financial limits on the use of genetic tests.

No-one should be dissuaded from potentially life-saving testing out of fear of discrimination in life insurance products. Australia lags globally on this issue, with some form of prohibition or ban in place in the UK, Canada, Europe, the US and New Zealand. The consultation will close on 31 January 2024, and I encourage those interested in this important issue to put in a submission to the consultation. Thanks again to Dr Jane Tiller, the author of the Monash report, for her ongoing advocacy in this area.

11:45 am

Photo of Michelle Ananda-RajahMichelle Ananda-Rajah (Higgins, Australian Labor Party) Share this | | Hansard source

Today we discuss a matter that lies at the intersection of science, health and human rights. In a world where medical breakthroughs continually shape our understanding of disease and health, the field of genetics has, for decades, held great promise but not fully realised its potential, due to problems with equity of access, the absence of an overarching national strategy and the challenges of navigating care, which are all made worse by the tyranny of distance across our vast land.

In adult medicine, I saw firsthand how the incorporation of genetic information in tumour typing guided choice of first-line and salvage chemotherapy for a range of tumours, including breast, bowel and haematological malignancies. Patients with blood cancers like leukaemia and lymphoma cycle between clinical trials based on biomarkers in their tumours. I often encountered patients who died not from their leukaemia but from opportunistic infections due to fungal pathogens or dormant viruses triggered by a failing immune system. Surprisingly, however, thanks to targeted immunotherapies, many patients lived years with poor prognostic cancer before the bugs finally caught up with them. Cancer as a chronic disease could become a reality thanks to genomics. The evolving genetic profile of the tumour can be matched to a different treatment regimen, often in a trial context. These patients have access to next-generation sequencing, advanced bioinformatics and cutting-edge treatments, thanks to clinicians and clinical trial teams who are competitive at obtaining funding for research.

How many Australians have access to this level of expertise? In my own electorate, Cabrini Health's Malvern hospital has a state-of-the-art cancer centre and is looking to expand with a $200 million investment in infrastructure. Patients will have their cancers biopsied; staged with CT, MRI or PET; sequenced; and analysed with AI. The patients will undergo surgery if required, be admitted into clinical trials and be provided with treatment either at home or in-house, in the beautiful oncology suite—thanks to the generous support from the Gandel family—with or without radiotherapy provided in the basement by GenesisCare, and the supportive care extends to exercise physiologists undertaking research in the gym downstairs. This is not science fiction; this is already happening: true one-stop care along the disease continuum. How many facilities in Australia can boast this level of care? Somehow, thanks to the smarts and networks of their specialist doctors, these patients are given access to highly specialised medicine. No crowdfunding is required.

I want to commend Rare Cancers Australia for unpacking, in their Vision 20-30 report, what best practice should look like. It describes, in poignant detail, the journeys of several Australians with a parallel future of what should have been. It draws upon multiple domain experts and patient voices to produce something to aspire to. Part of the challenge I see is the fragmentation of our health system, with siloed primary care, hospital care and community care. But Vision 20-30 shows us ways of overcoming those barriers by putting patients, with their GPs, at the centre, supported by a network of specialist doctors and teams. It does mean stopping the attrition of general practitioners and supporting Medicare with bulk billing. This is why we have introduced a $3.5 billion tripling in the bulk-billing incentive. It absolutely impacts patients who suffer from cancer. We are also trying to arrest the decline in bulk billing and in GPs leaving the profession. We have introduced fee waivers for GP trainees in remote and regional areas and extended funding for longer consultations.

I am pleased that the Albanese government is committing $166 million for a first-of-its-kind Australian Cancer Nursing and Navigation Program as part of its support of the recently released landmark Australian Cancer Plan. Cancer nurses will help patients navigate the bewildering complexity of the health system when they are most vulnerable. Patients travelling between specialists, with GPs simply getting the letters—if they're lucky—is neither efficient, affordable nor patient centred.

Muddying the waters, of course, is the issue of genetic information and life insurance. Currently, there is no legislation that prohibits the use of genetic information by life insurance companies to deny or increase the cost of cover.

This is despite a 2018 parliamentary joint committee report recommending that a ban be implemented. The current limits to consumer protection mean that Australia is not fulfilling the potential of genetic medicine, and this is something that we need to reform. It underscores the importance of the work that is being led currently by Minister Stephen Jones to prevent genetic discrimination entering our lives. An overarching national strategy will help us tie up these loose ends and enable Australians to benefit from the advances of genomics.

11:50 am

Photo of Russell BroadbentRussell Broadbent (Monash, Independent) Share this | | Hansard source

I thank Dr Freelander for bringing this motion before the parliament and the Australian people. It's good to hear the expertise of the member for Higgins in the speech she just delivered to the House. The government must act to protect patient confidentiality and prevent genetic discrimination. Australia has a distinguished history of innovation in medicine—for example, the electronic pacemaker in 1926, ultrasound in 1961 and the multichannel cochlear implant in the 1970s, which my father's hearing benefited from. This innovative spirit is backed by our nation's global reputation for producing groundbreaking research. This reputation has been hard won over long decades through dedicated scientific inquiry, rigorous research and, above all, adherence to ethical principles.

In recent years we've seen increasing research in and accessibility to testing in the field of genetics. This field has the potential to help us take significant steps towards understanding the nature of genetically linked diseases—diseases like cancer, heart disease and Alzheimer's. In addition, this field has the potential to help us develop personalised prevention and treatment strategies, which would be a game changer for thousands of people across the world. Imagine for a moment, though, a patient who has had genetic testing done, whether it be for research or for personal preventative health measures, then being penalised by insurers for taking this step, through high premiums, lower insurance levels or not being able to access insurance at all. That becomes a deterrent to being tested.

Progress in the field of genetic medicine should not come at the cost of breaching the fundamental principles of privacy and confidentiality for individual patients. We must ask ourselves: are we truly committed to improving the health of this nation? If so, are we truly committed to protecting the rights of our citizens to privacy, confidentiality and the protection of their medical information? These are fundamental human rights. Australia's international human rights obligations demand that we do not discriminate on the basis of genetics. Article 6 of the UN's Universal Declaration on the Human Genome and Human Rights requires a prohibition on discrimination based on genetic characteristics. Article 25 of the UN Convention on the Rights of Persons with Disabilities specifically refers to discrimination in the offer of life insurance. Meanwhile, Australia's Disability Discrimination Act 1992 prohibits discrimination based on genetic status. However, there is an exemption for insurers if an underwriting decision is based on reasonable data. How is that fair? How does that protect the confidentiality and freedom from discrimination of everyday Australians?

Australia is lagging behind our Commonwealth partners in numerous countries around the globe. Both Canada and the UK protect the genetic information of individuals more than we do and have taken significant steps to prohibit the use of genetic test results in life, income-protection, and critical-illness insurance. A review by the Geneva Association showed that 13 of the 20 listed countries protected the disclosure of genetic results to insurers in any circumstance. Australia is not part of that group. Who would have thought, in 2023, that Australia would lag behind the world on the protection of confidential patient information and the prevention of genetic discrimination?

This nation needs to, first and foremost, protect the privacy of Australians, eliminate genetic discrimination and give people confidence to be tested so that they can participate in research and remove the barrier to Australia providing targeted health measures in future planning. The first action must be to remove the exemption of insurers in the Disability Discrimination Act 1992. Regardless, our Commonwealth, state and territory governments must work towards protecting the confidential genetic information and prohibiting genetic discrimination of the Australian people. I cannot make the case more clearly than I have today on behalf of the people of Australia. Big business may not like this, but I am still here about this nation's people.

11:55 am

Photo of Monique RyanMonique Ryan (Kooyong, Independent) Share this | | Hansard source

It is with great pleasure that I rise to support this motion from the member for Macarthur. When I was a youngling doctor, ordering standard chromosomal testing was about the limit of what we could do. We can now routinely test for genetic changes on blood, cheek swabs, saliva samples, tumours, chorionic villi and amniotic fluid. We can even test for changes in fetal cells derived from a mother's bloodstream. Clinicians can now order whole genome sequencing from clinic with a few mouse clicks. I was fortunate, during my previous career as a paediatric neurologist, to be involved in identification of the genes responsible for 11 neurological conditions and to lead some of the first gene and genetic therapy trials in this country. Those technological advances were unthinkable when the member for Macarthur and I were medical students several centuries ago. But, as always with rapid advances in clinical medicine, it's really important that we examine all aspects of impact—both cost and benefit—in building the case for scalable, sustainable and equitable genetic and genomic health care.

There are significant challenges locally with access to genetic testing services in Australia. I recently met with my colleagues Professor Stephen O'Leary, Lilian Downie and Valerie Sung, who are representatives of the Childhood Hearing Australasian Medical Professionals network. They also work at the University of Melbourne, Royal Women's Hospital and the MCRI. They told me about their concerns regarding federally funded genetic testing. The Medical Services Advisory Committee recently approved new item numbers for genetic testing for hearing loss in children and for adults with hearing loss, but they allotted fees significantly lower than those recommended by the experts. Because the rebate offered is below the cost of the test, the few qualified Australian laboratories have been unable to offer this genetic testing. This problem, while vexatious, is not unique; rebates offered for testing of other conditions are often funded below levels that make it possible for labs to offer the test. When these investigators requested review of the MSAC decision, they were told that not only would they not get an answer for the disparity in the funding but they would have to file a whole new application if they wanted it reviewed. Those clinicians have been let down by the system. It lacks accountability, it lacks transparency and it lacks clarity.

I've also previously spoken in this House about the issues around life insurance and the fear of genetic discrimination in this country. Earlier this year, I spoke to a motion from my colleague the member for Macnamara regarding that the government act by amending the Disability Discrimination Act 1992 as it applies to genetic results. This morning the government has announced a consultation period regarding options for regulatory interventions into the insurance industry. While recognising the stresses upon our insurance industry, which are manifold—particularly given the increasing impact of climate change—we do need to ensure that concerns around the potential impact on insurability don't dissuade people from undergoing important genetic testing. It can have an impact on not only their medical care but also their family members. We have to guard against adverse selection—where people, knowing that they have a genetic disease, seek cover that they would not otherwise obtain—but we also have to ensure that individuals are not deterred from potentially life-saving genetic testing and from participation in genetic research. I look forward to working with all of my constituents on suggestions regarding these possible regulatory changes.

Recently, the federal government's Department of Health and Aged Care's capability review identified the need for us to be on the front foot in the revolution in genomics. The government recently announced $66 million for genomics research by the MRFF, but, as is often with the case with the MRFF, we don't have a vision for all aspects of this research and the basis for funding allocations.

I do support calls not only for a national genomics strategy but also for an overarching diagnostics advisory group, which will not only improve genetic and genomic diagnosis in this country but also establish a road map for all aspects of our healthcare diagnostics and treatments.

Photo of Alicia PayneAlicia Payne (Canberra, Australian Labor Party) Share 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.