Mr BROADBENT (Monash) (12:01): On behalf of the Committee of Privileges and Members' Interests, I present the committee's report entitled Register of Members' Interests: complaint concerning the member for Pearce.

In accordance with standing order 39(e) the report was made a Parliamentary Paper.

Mr ANDREWS (Menzies) (12:09): On behalf of the Joint Standing Committee on the National Disability Insurance Scheme, I present the following reports: the NDIS Quality and Safeguards Commission and General issues2021.

Reports made parliamentary papers in accordance with standing order 39(e).

Mr ANDREWS: by leave—The establishment of the NDIS Quality and Safeguards Commission to provide centralised oversight of safeguarding for the NDIS was an important step towards improving safeguards and the quality of service provision for people with disability in Australia. This oversight is especially important for NDIS participants who may face increased risks of being subject to abuse, exploitation or neglect.

The committee decided to conduct an inquiry into the commission after issues with the oversight and regulation of disability service providers, including by the commission, emerged in the light of the media attention and subsequent inquiries into the tragic death of Ms Ann-Marie Smith. The inquiry has identified areas in which the commission's approach to its work could be improved. In particular, the committee heard that the commission should be more proactive in its engagement with participants and the sector, and in its compliance and enforcement measures. In addition, gaps persist in safeguarding arrangements for NDIS participants and people with disability more broadly, particularly in the areas where NDIS services interface with services provided by state or territory governments or other areas of the federal system.

This report includes 30 recommendations in relation to these matters and other areas of the commission's work. As noted throughout the report, since the inquiry began in mid-2020, the commission has adopted a range of measures to improve its practice and processes. The committee welcomes these changes and was pleased to note the commission's willingness to listen to people with disability, their advocates and the sector, and to adapt processes in response over the course of the inquiry.

It is nonetheless clear that safeguarding gaps continue to exist for people with disability and that work by the commission and all Australian governments needs to continually identify safeguarding gaps and quickly address them. The review of the NDIS Quality and Safeguarding Framework is crucial in this respect, and, in addition to its specific recommendations, the committee urges the government to carefully consider all the matters raised in this report in that review.

I turn then to the General issues2021 report. The committee's inquiry into general issues related to the implementation and performance of the NDIS provides an ongoing opportunity for the public to present important evidence to the committee related to the NDIS, including its implementation, performance, governance, administration and expenditure. This is the committee's second report in the 46th Parliament for this inquiry. It examines new issues raised in evidence to the general issues inquiry, since the tabling of the first report in December 2020, and provides an update on the committee's recent activities. Chapter 5 of the report also contains the committee's interim report in relation to its inquiry into the current scheme implementation and forecasting for the NDIS and makes one recommendation in relation to that inquiry.

In conclusion, the committee thanks all those who contributed to the committee's inquiries by lodging submissions, providing additional information or expressing their views via correspondence. The committee would also like to thank those who gave their time to attend the committee's public hearings. In particular the committee acknowledges the people with disability, their families and carers who shared their experiences. The testimony of people with lived experience is crucial to identify issues with the NDIS and improve the operation of the scheme.

I thank all the members of the committee, the deputy chair, Senator Brown and the other members, and I thank the secretariat for their wonderful ongoing work in this regard.

Mr SHORTEN (Maribyrnong) (12:14): by leave—I would like to say a few words on the tabling of these important reports on the National Disability Insurance Scheme. I congratulate and commend the work of the member for Menzies as the chair and Senator Carol Brown as the deputy chair, and I commend the reports. I also want to thank the secretariat for their conduct of both of these particular reports. These reports make a number of important recommendations.

Let me turn to the first report on general issues tabled. The Morrison government has, I'm sorry to say, been undermining public confidence in the National Disability Insurance Scheme by talking down the sustainability of the scheme at every public occasion. I also think they have done a disservice to the 467,000 participants in the scheme by listing two, three or four matters where funding was granted in controversial circumstances. This has been about reducing the NDIS. In 2021—the Speaker might be interested to know—the Morrison government put out 10 conflicting sets of numbers about the financial health of the scheme to justify some of the changes which it's proposed bringing into the scheme. It's also underestimated and undermined the scheme by failing to look at the benefit of the $22 billion scheme. The National Disability Services, the peak body for employers in the disability services sector, did a report from an independent group of economists who revealed that the $22 billion scheme was injecting $52 billion into the Australian economy. So, for every dollar spent on the NDIS, it was generating $2.25 in economic activity.

I also think that this overreach and undermining of the scheme has been used to justify an extraordinary power grab which would see the Morrison government hand unprecedented God powers, if you like, to the unelected public servant heading the national disability agency to step into peoples' plans and change any matter. The government has described the NDIS as a welfare agency rather than the great, generous Australian safety net of universal support which it was originally intended to be.

Also I need to report my concern that there's been an explosion of NDIS appeals against the Morrison government, as revealed by the Administrative Appeals Tribunal's annual report. The 2020-21 AAT annual report reveals that the NDIS division of the AAT has seen a 21 per cent increase in appeals lodged since the last financial year and a 77 per cent increase in the number of cases that were not finalised by the end of the financial year, with 1,631 outstanding decisions. The median time to finalise cases has now blown out by five weeks to 23 weeks. The explosion in appeals, I submit, has been driven by ordinary Australians having to resort to taking their own government to court in order to receive a universal safety net payment. It has become a battleground where the Morrison government turns up with all of its Goliath-like resources—the expensive private law firms—to fight Australians in their David-like struggle, where they have just themselves or advocates, if they can find the scarce advocate resources to do so. What shows that there is a deliberate strategy of undermining the NDIS by litigating until the participant or the person with a disability just gives up is that the percentage of cases brought to the AAT that are finalised in the AAT process without a decision is 98 per cent. So there is a lot of settling at the door of court by government lawyers once they realise the participant will not simply give up on their right to a modest level of support.

The Morrison government should explain the huge increase in appeals and the blowout in finalising cases. These are facts which cannot be spun away. It should explain itself to participants and parents like Liv and her mum, Gemma, who were forced to take the government to the AAT when Liv's funding was slashed. She was refused assistive technology which could assist her to walk. I do not make this up. The increase in AAT appeals is a symptom, I submit, of the Morrison government's increasing attempts to cut the scheme by stealth by refusing supports or slashing plans and defying the participant to fight on. The number of AAT cases as a proportion of NDIS participants more than doubled between June 2020 and September 2021. The government is doing everything in its power to discourage participants on the plans and to make changes to the plans of people with disabilities, forcing them to fight.

In regard to the second report, the quality and safeguards report, we still need an independent inquiry into deaths of participants who were under the care of the NDIS, and we will continue to push for an independent inquiry. The government makes its point about pink batts and talks about people who died as the contractors were rolling out poor health and safety in that scheme, but it is unfortunately silent when we talk about participants of the NDIS who died while they were receiving NDIS packages or who had their NDIS packages terminated. Geoff Barker passed away on 2 May. His family had told the NDIA's arranged support worker that Geoff was in crisis and needed daily check-ups or he would die. Despite raising the alarm on 20 April this year—Geoff, who was 50 when he passed, had uncontrolled diabetes and experienced a severe bipolar condition—he was found unconscious by a carer on 2 May. The family notified the support coordinator on 20 April. He was found unconscious by a carer on 2 May. He hadn't been checked on for several days when he was found. His family have since discovered that the approved regular checks on Geoff and his partner, who also lives with a severe mental illness, were not being conducted. The family do not know how long he was unconscious before he was found. It is the latest in a series of tragedies in the NDIS caused by negligent stewardship of the scheme by the current government.

In South Australia, Ann-Marie Smith died of severe neglect after being left in a cane chair for many months. She was left in the cane chair where she was toileted and fed and slept. In New South Wales, David Harris was found deaths months after he had died, after the NDIS cut off his supports because he hadn't attended a planning meeting. In Tasmania, Tim Rubenach, who passed in 2018, died in severe pain while waiting for the NDIS to send him a new bed and chair. In Queensland, Liam Daniher died earlier this year after months of fighting the NDIS for a seizure mat to help his epileptic condition that his family say would have saved his life.

The report makes 30 recommendations in respect of safeguarding people with disabilities in the NDIS. But where you have not one, not two, but at least five tragedies, surely this would prompt the government to do an independent investigation. How many people have to die on the NDIS before the government thinks this is more than just another day at the office? We should look at this report on the Quality and Safeguards Commission and it should be acted upon. As we break for the summer, if Minister Reynolds does not take heed of these clearly articulated solutions to a glaringly obvious, well-documented and well-known problem—a problem, though, which has lives at risk—people with disabilities are disproportionately unsafe under the Morrison government's toothless watchdog and ineffectual safeguarding system.

For every person who is harmed and the government fails to respond to the report, upon whose head does that rest? In a similar vein, the government's record on protecting people with disabilities during COVID has been disappointing to say the least. They were promised to be at the front of the queue with the rollout of the vaccinations—and we find out in a Senate hearing that the government had reprioritised people with disability down the queue—

Mr SHORTEN: You can get up later and say whatever you want, Minister for Health.

Mr SHORTEN: The Minister for Health finds the truth of the neglect of this government on the NDIS uncomfortable and he seeks to shut me down. You can try to shut me down but the voters will have their say on your poor stewardship. The federal government has a responsibility to show leadership. The minister says it is unfair of me to raise these issues. I bet you haven't even read the member for Menzies' report, which talks about 30 recommendations. Which one do you agree with? Which one don't you agree with? Indeed, have you even read it? But that doesn't stop you from lambasting me. The government looks forward to the 'prompt response'. You've had eight years, government. I look forward to your 'prompt response'. The minister's very good at laying the blame at Labor's feet for mistakes made under previous administrations, but he doesn't have a mirror in his own policy house to examine their own failings.

There are too many heart-rending stories. The people whose names I read out are real people with real families. There is too much victim-blaming. There is too much quiet whispering in the corridors of the gallery, where they say to the journalists that the scheme is too expensive, that the housing packages are too expensive, that too many people with autism are getting funding and that the safeguards commission is not functioning as it should. This is the report. There are too many stories of misery inflicted on people the scheme was meant to help. The first step of comeback, of build back, for the NDIS has to be honouring the scheme's original intent. I hope the reforms being made which are proposed in the member for Menzies's report are not in another report to gather dust on the desk of this work-shy government. This government's stewardship of and record on the NDIS and its care for the vulnerable, tragically, leaves a lot to be desired and, in the case of some people, is just too late.

Mr HUNT (Flinders—Minister for Health and Aged Care) (12:26): I want to thank all of those who've spoken during the course of this debate. The amendments in the National Health Amendment (Enhancing the Pharmaceutical Benefits Scheme) Bill 2021 will support patient access to medicines and reflect new long-term five-year agreements with Medicines Australia and the Generic Biosimilar Medicines Association, GBMA, that collectively represent the medicines industry in Australia. These agreements build upon the longstanding partnership the government has fostered with Australia's medicines industry with the shared goal of supporting Australian patients.

The new five-year strategic agreements with Medicines Australia and GBMA will (1) ensure that Australians continue to gain access to new breakthrough medicines and treatments as early as possible (2) deliver robust and uninterrupted supply of the medicines that Australians need and use every day and (3) keep the PBS on a long-term sustainable footing for patients, the industry and taxpayers. Specifically, the measures in this bill, which are part of a comprehensive package of reforms and improvements to the Pharmaceutical Benefits Scheme co-developed with the medicines industry, will deliver (1) an improved statutory price framework which will support the ongoing investment in new PBS medicines and (2) a new medicines supply security guarantee, which will deliver greater levels of stock of commonly prescribed, older and very low cost PBS medicines, which, in recent years, have become susceptible to global medicine shortages. As part of this, there will be four to six months mandatory stockholding requirements for the relevant medicines, which will provide more reliable supply of medicines for many conditions, including high blood pressure, diabetes, epilepsy and mental health conditions such as depression.

I would like to acknowledge representations from some of the pharmaceutical companies in relation to proposed section 99ACN of the bill, which gives effect to some of the statutory price reductions agreed with the sector. The intention of section 99ACN is to apply a one-off statutory price reduction on 1 April 2023 to brands of pharmaceutical items that include drugs that have been listed on the PBS for 15 years or more and have not taken a price disclosure reduction. Whilst these provisions are intended to ensure judicious use of taxpayer money for the subsidy of medicines, importantly, as is the case now, and consistent with the broader intent of the bill, the prices of important PBS listed medicines will not be allowed to be reduced below that which is needed to secure supply for Australian patients.

The bill provides for several safeguards, including the continuation of ministerial discretion for statutory price reductions to not apply, as well as the introduction of new price protections and floor prices. I thank in particular the opposition and the shadow minister for health for their assistance in and support of these provisions. I undertake that there will be careful consideration during the life of this parliament for any issues that arise under that discretion.

Since its initial introduction in 2018, ministerial discretion has been an effective and reliable mechanism for preventing statutory price reductions where they would not be appropriate. The bill therefore provides for the continuation of these powers for all statutory price reductions under the act where necessary to ensure that statutory price reductions do not jeopardise the supply of important medicines. The Australian government appreciates the importance of these protections for the pharmaceutical industry and for patients that rely on their medicines. This has been conveyed to government during the parliamentary engagement process over recent weeks and during consultation with the sector. Accordingly, my department is commencing consultation with Medicines Australia, the GBMA and other companies on the consequential amendments and updates to ministerial discretion guidance material that will arise from this bill and will inform the application process going forward. Should a company believe that a statutory price reduction under the act would result in an adverse outcome for patients, they will have the opportunity to request ministerial discretion prior to any reduction occurring. It is important to note that forecast price reductions to specific medicines anticipated from 1 April 2023 will be published well in advance of that date to ensure predictability for companies, patients and the government.

The legislative elements of these landmark agreements are in addition to the significant policy and process reforms committed to in the strategic agreements with MA and GBMA that will benefit Australian patients and taxpayers and advance the interests of the medicines industry. These include: at least $5 billion of uncapped new investment in PBS medicines listed over the life of the agreement, which consists of the PBS new medicines funding guarantee and the reinvestment of the efficiencies agreed with the sector and enacted through this bill; the co-design and implementation of an enhanced consumer engagement process to better capture the patient voice early in the medicines assessment process; ongoing and timely access to medicines through a review of Australia's health technology, assessment, policy and methods to support continuous improvement; a horizon-scanning forum to ensure Australians have early access to breakthrough treatments; and commitments to policy stability and predictability for the industry and for government. These landmark agreements build on the government's strong record on the PBS, which is demonstrated through the Seventh Community Pharmacy Agreement between the Australian government, the Pharmacy Guild of Australia and the Pharmaceutical Society of Australia, signed in June of 2020; and improvements to the pharmaceutical wholesaler arrangements designed with the National Pharmaceutical Services Association and established through the seventh CPA.

In conclusion, the amendments in the bill will deliver improvements to the operation of the PBS for the benefit of patients, taxpayers and the medicines industry. I would like to thank the negotiating team from Medicines Australia, GBMA and my department, who have demonstrated incredible commitment to achieving this outcome in the interests of patients and taxpayers. Penny, Adriana, Nikolai, Dan, and Sam Develin from my office have all worked tirelessly, along with the teams from MA and GBMA. All have operated in good faith. In particular, I would like to thank Anna Lavelle, Liz de Somer, Neil MacGregor, Liz Chapman and Bruce Goodwin from MA; and Jane Halton, Marnie Peterson, Dennis Bastas from the Generic Biosimilar Medicines Association for their hard work, creativity and ingenuity that have attributed to the new strategic agreement and the innovative reforms in this bill. As I mentioned, Penny Shakespeare, Adriana Platona, Nikolai Tsyganov, Daniel Chaston and Andrew Whiteshead from the Department of Health; and Sam Devlin from my office and Stacey Edmondson and Nicole Green have all contributed.

In particular, I do want to note and thank all speakers who have been part of this. I note The New Frontier: Delivering better health for all Australians report from the inquiry into approval processes for new drugs and novel medical technologies in Australia from the House of Representatives Standing Committee on Health, Aged Care and Sport. This is an important initiative. We will consider it and we will look forward to responding as constructively as possible to as many of the recommendations as possible. It's about giving better access to new medicines as early as possible. It's about ensuring the continued strengthening of the medicines and device technology sectors in Australia and the clinical trials sector in Australia. It's an important reference. We thank the opposition and the crossbench for their proposed amendments. We respectfully will not be adopting either of those.

I want to note on a very positive front that on the weekend I was pleased to be joined by Sharn Coombes, our candidate for the seat of Dunkley, for the listing of another new medicine: Venetoclax, which will be available tomorrow for over 340 patients with acute myeloid leukaemia. Venetoclax is an important and significant addition, to ensure that patients who suffer from acute myeloid leukaemia will have access to a medicine which would otherwise cost $88,000 and which now will be available for as little as $41.30 per script, or $6.60 per script for concessional patients. That's what the PBS is about. That's what this bill is about—making as many medicines available as early as possible to as many patients as possible.

In conclusion, since October 2013, on precisely that front, over 2,800 new or amended medicine listings have been made on the PBS from an overall investment of $14 billion. The government has a policy to list all new medicines recommended for listing by the experts on the PBAC, and this bill will ensure that this can continue to occur long into the future. I thank the members for their contributions to debate on this bill. I commend the bill to the House.

The DEPUTY SPEAKER ( Mr Rob Mitchell ): The original question was that this bill be now read a second time. To this the honourable member for Hindmarsh has moved an amendment that all words after 'That' be omitted with a view to substituting other words. The honourable member for Hughes has moved as an amendment to that amendment that all words after 'whilst' be omitted with a view to substituting other words. So the immediate question is that the amendment moved by the honourable member for Hughes be disagreed to.

Question agreed to.

The DEPUTY SPEAKER: The question now is that the amendment moved by the honourable member for Hindmarsh be disagreed to.

Question agreed to.

Original question agreed to.

Bill read a second time.

Message from the Governor-General recommending appropriation announced.

Mr CRAIG KELLY (Hughes) (12:37): I move amendment (1) circulated in my name:

(1) Schedule 1, page 3 (before line 4), before the heading specifying National Health Amendment (Pharmaceutical Benefits-Budget and Other Measures) Act 2018, insert:

National Health Act 1953

1A At the end of section 9B

Add:

(11) Nothing in this section or any other Commonwealth law allows the Minister to:

(a) require a person to receive a vaccine; or

(b) provide, or arrange for the provision of, a vaccine unless the Minister is satisfied on reasonable grounds that the vaccine is not or will not be administered to a person without the person's free and informed consent.

(12) Without limiting paragraph (11)(b), a person's consent to the administration of a vaccine to the person is not free and informed if:

(a) when the person consents, the person is under a threat of negative consequences (including prejudice or disadvantage) if the person does not consent; or

(b) the consent is a result of coercion.

1B After subsection 84C(1AA)

Insert:

(lAB) To avoid doubt, for the purposes of determining a person's eligibility for a concession card or any other concession or benefit under this Act, it is irrelevant whether the person has been injected with any:

(a) experimental medical intervention; or

(b) medical intervention that has less than 5 years of safety data.

1C After subsection 101(4F)

Insert:

(4G) The Pharmaceutical Benefits Advisory Committee must:

(a) review recommendations made by the Advisory Committee on Medicines Scheduling in relation to new restrictions on prescribing previously approved drugs for off-label use; and

(b) advise the Minister and the Department about the recommendations.

1D After subsection 132G(2)

Insert:

(2B) Nothing in this section or any other Commonwealth law allows the Minister to:

(a) require a person to receive a COVID-19 vaccine; or

(b) provide, or arrange for the provision of, a COVID-19 vaccine unless the Minister is satisfied on reasonable grounds that the vaccine is not or will not be administered to a person without the person's free and informed consent.

(2C) Without limiting paragraph (2B)(b), a person's consent to the administration of a COVID-19 vaccine to the person is not free and informed if:

(a) when the person consents, the person is under a threat of negative consequences (including prejudice or disadvantage) if the person does not consent; or

(b) the consent is a result of coercion.

1E At the end of Part VIIIB

Add:

132H Restrictions on COVID-19 treatments

(1) This section applies to a treatment for COVID-19 that:

(a) has documented success in reducing hospitalisation or death from COVID-19; and

(b) is currently being provided by medical practitioners in Australia.

(2) Before the Minister engages in conduct (whether or not under this Act) that would have the effect of restricting the ability of medical practitioners to provide the treatment, the Minister must consult with the medical practitioners in Australia who currently provide the treatment.

(3) For the purposes of subsection (2), engages in conduct includes makes a legislative instrument.

There are five separate clauses to this one amendment which I have put together as a single amendment for the ease of the House. Firstly, I will talk about clauses 1A and 1D together as they are basically the same. They amend to enhance the Pharmaceutical Benefits Scheme section 9B, which is the provision of vaccines, and also section 132G(2), which is the provision of COVID vaccines and treatments. Both parts have the same wording, which I'll read out. They add two paragraphs to both those sections, and they are:

(11) Nothing in this section or any other Commonwealth law allows the Minister to:

(a) require a person to receive a vaccine; or

(b) provide, or arrange for the provision of, a vaccine unless the Minister is satisfied on reasonable grounds that the vaccine is not or will not be administered to a person without the person's free and informed consent.

(12) Without limiting paragraph (11)(b), a person's consent to the administration of a vaccine to the person is not free and informed if:

(a) when the person consents, the person is under a threat of negative consequences (including prejudice or disadvantage) if the person does not consent; or

(b) the consent is a result of coercion.

These two additional parts of the amendment to the National Health Act are most important. We have two provisions in the act about the provision of vaccines, but neither of them have any requirement that the administration of those vaccines be only done with free and informed consent. This is a fundamental tenet of medical ethics that has developed over the centuries, and it should be in our National Health Act to spell it out loudly and clearly.

The reason this amendment is needed is that it's very clear when it comes to free consent that we have medical treatments being administered in this nation today that are not given with free consent. And we see it in thousands of jobs, tens of thousands of jobs and occupations, from airline pilots to nurses to schoolteachers to people that work at Woolworths. They are facing not only a loss of their job unless they submit to take one of the COVID vaccines; in many cases, they are facing the loss of their career. They are being prohibited to work in their career of choice. When someone has a mortgage to pay, when someone has rent to pay, when someone has children that they need to look after, they have no option; it is coercion and threats that they are actually taking these COVID vaccines under. That is not free consent. We have a society at the moment where you cannot cross a state border unless you have been vaccinated. In Sydney today, I cannot sit in a barber's chair and get a haircut; I cannot sit in a barber's chair in Queanbeyan, but, if I come across the border to Canberra, I can get a haircut. In Sydney today, inside, I cannot sing, I cannot dance, because I'm unvaccinated.

This is an absurdity. We are abandoning those principles of medical ethics that have stood us in good stead and have been developed over the centuries. Those two provisions need to be put in to ensure that we are getting free consent. Because it's free and informed—that's the phrase. There is also no informed consent. How can we have informed consent in this nation when we have doctors that are censored and silenced and face threat of deregistration if they decide to put up an alternative expert medical opinion?

There is no one source of truth in this issue. It is important that we allow doctors to be doctors, to practise medicine. (Time expired)

The DEPUTY SPEAKER ( Mr Rob Mitchell ): Do you want to seek the call again?

Mr CRAIG KELLY: I seek the call again.

The DEPUTY SPEAKER: Member for Hughes.

Mr CRAIG KELLY: Doctors must be free to give their own opinion to their patients. The sanctity of the doctor-patient relationship is important, and we cannot have informed consent in this nation if our doctors are silenced, censored and face threat of deregistration, because that is exactly what is happening. There cannot be informed consent when other medical experts from around the world, such as Dr Peter McCullough—probably one of the most highly qualified medical minds in all of the United States of America—says, in his belief, that the vaccines are not sufficiently effective and they are not sufficiently safe and should be stopped tomorrow, but his opinion is not allowed on any mainstream media. His opinion is censored from places like Facebook and Twitter. How can there be informed consent if there is a suppression of free speech? And how can there be informed consent when we continue to say 'safe and effective' but yet there is zero—I repeat zero—long-term safety data?

As for the short-term safety data, the method of data collection is not fit for purpose. It is grossly underreporting the number of adverse events. I'll give an example of this. We have the TGA collecting data for adverse events, and they currently say the number of adverse events from the COVID vaccines is 0.21 per cent. The question is: how many are being underreported? The TGA say: very little. However, we have another group that reports on vaccine safety, called AusVaxSafety. What do AusVaxSafety do? They actually contact, rather than wait for a voluntary response. They are sending SMS messages out to people after they have the COVID vaccine. They have got over four million responses back, and those responses show that the number of people going to a hospital or emergency department or doctor's surgery—which, according to the TGA, should all be reported, under the method they use—is running at 0.9 per cent. So the TGA data is 0.21 per cent, and the AusVaxSafety data is 0.9 per cent—and we know the AusVaxSafety data is underreported because it only goes out on the third day. From that, we know that the TGA's data of adverse events is missing at least 75 per cent of adverse events occurring. Yet that is not reported.

How can there be informed consent? Are parents aware that when their child, a 12- to 17-year-old child, goes and gets a vaccine, their child, if they are in the United States of America, would not be getting the Moderna vaccine because the Food and Drug Administration in the US has not yet decided that it is safe for injection in a 12-year-old child? Do Australian parents understand, and are they given the information, that the Moderna vaccine being injected into their 12-year-old child has been suspended as an injection for 12-year-old children in places like Germany, France, Denmark, Sweden, Finland and many other countries? Is that information being given to parents? Do parents know the data from AusVaxSafety about young adolescents, which shows that, in comparison to the Pfizer vaccine, while the Pfizer vaccine in adolescents reports at least one adverse event in 48 per cent of kids after the second dose the Moderna vaccine reports adverse events in an incredible 61 per cent? Are parents informed that, of the Pfizer vaccine in adolescents, just over one in 100 people report going to the emergency department and seeing a doctor after their second dose of Pfizer but just under two in 100 do if they are given a dose of Moderna? For adolescents, the chances of ending up needing to see a doctor or going to hospital increase by almost 100 per cent if they take the Moderna vaccine over the Pfizer vaccine. Are parents being informed of that? (Time expired)

The DEPUTY SPEAKER ( Mr Rob Mitchell ): Do you want to seek the call again?

Mr CRAIG KELLY: I seek the call again.

The DEPUTY SPEAKER: The member for Hughes.

Mr CRAIG KELLY: There is clearly not informed consent, and that is the reason why I have moved that amendment.

The other amendment I have moved in this series of amendments is about the functions of the Pharmaceutical Benefits Advisory Committee, to include after section 101(4F):

(4G) The Pharmaceutical Benefits Advisory Committee must:

(a) review recommendations made by the Advisory Committee on Medicines Scheduling in relation to new restrictions on prescribing previously approved drugs for off-label use …

Why is this needed? We have had this advisory committee on medicines deciding they would ban ivermectin in this country. Who reviews this decision? Who questions them? We have experts in this country—men like Professor Thomas Borody, with more letters after his name than the alphabet, and Emeritus Professor Robert Clancy—who not only have been using these treatments on Australians but have documented and shown that they are saving lives. They have documented and shown that they are keeping Australians out of hospital. Yet an unelected group of unaccountable faceless bureaucrats, many of them not even medical people, have come forward and told those two medical geniuses, who are among the highest qualified people in this country, that they cannot use a treatment that they have demonstrated will save lives. There clearly needs to be more oversight of these groups because they are not doing their job as the Australian public would want them to.

The other amendment is to section 132, which relates to the provision of COVID vaccines and treatments. It calls for the minister, before engaging in any conduct that would restrict any medical practitioners, such as Professor Borody and the 30 doctors he had working underneath him, to engage in some consultation. Has the minister sat down with Professor Borody to go through the results of his trials? There have been 600 patients and zero deaths. We know that in an equivalent group of 600 Australians who had COVID there would normally be seven deaths. There should be in the legislation a requirement for the minister and the department to consult with these medical doctors, who are saving lives, before they pull the rug from underneath them.

These are sensible amendments to this bill. They enhance the Pharmaceutical Benefits Scheme to talk simply about more oversight and more consultation and to make sure that the concepts of free and informed choice and consent are enshrined in law. I would hope that every single member of this House supports the amendments.

The DEPUTY SPEAKER ( Mr Rob Mitchell ): The question is that the amendment be disagreed to.

Question agreed to.

The DEPUTY SPEAKER: The question now is that the bill be agreed to.

Question agreed to.

Mr HUNT (Flinders—Minister for Health and Aged Care) (12:52): by leave—I move:

That this bill be now read a third time.

Question agreed to.

Bill read a third time.

Mr BRENDAN O'CONNOR (Gorton) (12:53): I'm pleased to speak on the Veterans' Affairs Legislation Amendment (Exempting Disability Payments from Income Testing and Other Measures) Bill 2021, and I move:

That all words after "That" be omitted with a view to substituting the following words:

"whilst not declining to give the bill a second reading, the House criticises the Government for:

(1) failing to increase the Totally and Permanently Incapacitated (TPI) Payment for disabled veterans and ignoring the concerns of Australia's 27,000 TPI veterans; and

(2) ignoring the recommendation of a Senate Foreign Affairs, Defence and Trade References Committee Inquiry into the TPI Payment (Special Rate of Disability Pension) that recommended that the Government consider an increase in the TPI payment".

At the outset, I say that Labor is on the side of Australian veterans and their families. We will be supporting the legislation, as it will simplify and streamline assistance to veterans and improve their wellbeing. The bill addresses recommendations made by Mr David Tune in his 2019 Independent Review of the Totally and Permanently Incapacitated Payment—the Tune review as it's now known—and the Productivity Commission's 2019 report entitled A better way to support veterans. I note that the Morrison government first announced these measures in the 2020-21 budget, and it announced its intention to bring forward these important changes from 20 September to 1 January 2022 in this year's budget following pressure from Labor and the TPI veterans.

These reforms will simplify the administration of some payments for veterans and their dependants. This will be done by exempting disability payments from income testing under the Social Security Act 1991, simplifying payment arrangements for approximately 14,000 veterans and their dependants. The government will also increase access to rent assistance for most of our veterans with disabilities. This will benefit approximately 6,900 veterans and their dependants. Specifically, the first schedule will implement the government's commitment to exempt the adjusted disability pension defined in the Veterans' Entitlements Act 1986 from the income test under the Social Security Act. This will remove the need for the Defence Force income support allowance, known as DFISA. Introduced in 2004, DFISA was paid as a top-up to ensure that veterans who received an age pension under the Social Security Act were not financially disadvantaged. Changes in this schedule will ensure that veterans will receive the same payment as before, but the administrative process will be much simpler.

The second schedule will remove the disability income rent test from the Veterans' Entitlements Act. This will mean that veterans with disabilities will now have access to the same rent assistance as those who receive it from Centrelink. It will increase rent assistance payable to veterans or enable some veterans with disabilities to receive rent assistance for the very first time. The disability income rent test results in severely disabled veterans receiving less rent assistance than those with a lower level of disability. In particular, this measure will benefit totally and permanently incapacitated veterans who presently do not receive any rent assistance due to the amount of compensation they receive.

The third schedule will remove reference to the term 'disability pension' in the Veterans' Entitlements Act. In future, this payment will be referred to as the 'disability compensation payment'. This change will clarify that these payments are compensation and will reduce the potential for the payment to be confused with the Department of Social Services disability support pensions. The measures contained in these first three schedules will commence on 1 January next year.

The bill's fourth schedule will streamline indexation of disability pension compensation. Currently, the extreme disablement adjustment intermediate rate and special rates pension, colloquially known as the TPI payment, is split into two components for indexation purposes. Each is indexed separately. The fourth schedule will remove this anomaly so that the whole amount is indexed as one. This measure will commence on 20 September 2022. This will simplify the Department of Veterans' Affairs legislation, policy and procedures. It will also help avoid confusion for veterans about the purpose and structure of the extreme disablement adjustment intermediate and special rates of disability pension.

The fifth schedule in the bill introduces a pilot program for earlier access to rehabilitation. Labor supports this legislation, as it will improve and streamline assistance to veterans and improve their wellbeing. While those measures that I've just referred to in this bill are beneficial, we know it's actually not what most TPI veterans want. The reality is that most actually want an increase in the TPI payment.

I moved a second reading amendment on behalf of my colleague Shayne Neumann, who is in a position to speak to this bill but not in a position to procedurally move an amendment to this bill.

On behalf of Labor and, indeed, my shadow ministerial colleague, we moved that amendment because we are concerned that the commitments that were made, the undertakings that were given by the Prime Minister to this very important constituency, have gone without proper realisation of what was undertaken by the government. There was a very, very strong impression left on veterans and their families that this government, prior to the last election, was making an undertaking to increase the TPI payment, but we've seen no such increase to that payment. For that reason, the government should hang their heads in shame because that was the impression that the Prime Minister left them—that they would be providing an increase to the TPI payment—and that's not forthcoming.

Whilst of course we support the provisions because they will provide some support to some veterans with disabilities, particularly in relation to rent support, we believe they are too little. More should be done to provide support to this very important constituency, who have been advocating now for years to see increases to their TPI payment. While measures in this bill, as I say, are beneficial, we know it wasn't what they actually expected or wanted. I am moving this second reading amendment to call out the Morrison-Joyce government for its appalling treatment of Australia's 27,000 TPI veterans.

The Australian Federation of Totally and Permanently Incapacitated Ex Servicemen and Women, known as the TPI Federation, has raised the issue of the TPI payment for several years now, but the government has ignored their concerns. This is why Labor referred the issue of the adequacy of the TPI payment to a Senate inquiry earlier this year: so that TPI veterans could have their say. The Senate Foreign Affairs, Defence and Trade Committee inquiry into the TPI payment reported on 1 July this year and recommended that the government consider an increase in the payment. At the time, Labor called on the government to respond to the committee's unanimous recommendation, which would ensure that those veterans who have severe disabilities, in particular, would not be left behind. However, in its response to the inquiry tabled on 7 October, all the Morrison government could say was that it notes the recommendation and will take it into account when considering future policy options for support to TPI veterans. This was a grave disappointment to TPI veterans and their families, and it underlines that this government does like to make announcements and does like to give the impression of providing support to particular constituencies in the country, but doesn't follow through and doesn't always deliver, despite its undertakings earlier. It was just another blow for these long-suffering ex-service men and women.

As I say, before the 2019 election the Prime Minister raised the hopes of the TPI Federation that he would increase the payment by commissioning the review, only to dash them after the election with his flawed response to the review. After sitting on the report for more than a year, the Prime Minister announced in last year's delayed October budget that he'd provide only rent assistance to a small proportion of TPI veterans—about 10 per cent of all TPI veterans—leaving most very dismayed that they will miss out. In response to Labor's questions in Senate estimates last year, it was revealed these benefits would not start to flow until September next year, while the government made changes to legislation and IT systems. Following pressure from Labor and the TPI veterans, the government did bring forward the measures in this bill to January next year, but given that they have left it to the very last sitting week this year to introduce and pass legislation it's probably fair to say that they're cutting it very fine.

Given that this is now time critical, Labor will not stand in the way of these measures and want to see some assistance, however modest, for these most deserving former Defence personnel. We do censure the government for ignoring the recommendation of the Senate inquiry to boost the TPI payment and for its appalling treatment of TPI veterans over eight long years. The Prime Minister should listen to his colleagues, including Senator and former Major General Jim Molan, who said that this is the most deserving issue in the veteran community. I don't always agree with Senator Molan, but the fact is he is absolutely right when he says that this is one of the most deserving issues for the veterans community.

On top of this, we know that the Department of Veterans' Affairs is struggling to deal with a huge backlog of veterans with disability pension claims, with 68 per cent of claims yet to be finalised as of April this year. This, along with long waiting times for most veterans' claims, has prompted the Minister for Veterans' Affairs and Defence Personnel to commission a fresh review of the DVA claims processing system by one of the government's favoured consultants, McKinsey. Meanwhile the government refuses to address the real reason behind these dangerously long delays with assistance, which are having a terrible impact on veterans' mental health—that is, chronic staff shortages and record levels of labour hire workers, many of whom are not skilled to deal with this constituency, with the people who are in need of help. We say to the government that they need to do better in providing proper support and advice to the veteran community. It is just not good enough. Our veterans and their families deserve so much better. Notwithstanding this, the bill currently before the House is better than nothing. It will go some way towards supporting some veterans with disabilities and their families and former Defence personnel more broadly. To that extent, Labor supports this bill.

The DEPUTY SPEAKER ( Mr Rob Mitchell ): Is the amendment seconded?

Ms Swanson: I second the amendment and reserve my right to speak.

Mr McCORMACK (Riverina) (13:06): At the outset, I acknowledge that the member for Herbert is in the chamber. I recognise his fine service in uniform and, indeed, his ongoing contribution to veterans' affairs and to his community at large since he resumed life as a civilian. I also acknowledge that today in Brisbane the Royal Commission into Defence and Veteran Suicide continues and that senior counsel assisting, Kevin Connor SC, has said inquiry hearings will be held in regional centres such as Townsville, so proudly represented by the member for Herbert, as well as Wagga Wagga, my hometown, a city with tri-service representation—the Royal Australian Air Force at Forest Hill, the Royal Australian Navy at the RAAF base, and Kapooka, the home of the soldier, from which a long line of khaki stretching back to Gallipoli, and even before that, has marched out. Indeed, just the other day, Governor-General David Hurley was the reviewing officer at the latest march-out, where 60 or so recruits joined the 350,000 before them who now and in the past have proudly worn the khaki uniform. We say thanks to them. Thanks to you for your service. Thanks to you for your sacrifice. May that long continue and endure.

I listened carefully to the member for Gorton and I heard what he had to say about the total and permanently incapacitated payments. I would say to any veterans listening: don't just listen to what Labor says; observe carefully what Labor does. I well recall when I first served in this place what Labor did in the Defence space and what Labor didn't do in the veteran space. I'm proud to be part of a government which has provided record investment to Defence and very much listened to the needs and wants of our veteran community. As a former Minister for Veterans' Affairs, I'm very much in tune with what veterans have to say. I know that many veterans not only do their recruit training through Wagga Wagga and end up being posted to Wagga Wagga; they also return to Wagga Wagga and the Riverina once their military careers are over. In terms of requiring help, if any veteran is seeking to reach out to say that they are not okay—and it is alright to say that you're not okay whether you're in uniform or part of the wider civilian network here in Australia—they can call Open Arms, a 24-hour line, on 1800011046 or the Department of Defence All-hours Support Line on 1800628036.

I was pleased when I was the veterans' affairs minister that the Defence-centric or veteran-centric reform legislation was put to the parliament. That piece of legislation was very important for the current and future needs of those who wear and have worn our uniforms. Indeed, at 30 June 2019, the Australian Defence Force comprised about 58,000 permanent members—47,000 men and 11,000 women—and 27,500 active reserve personnel across the RAN, the Army and the RAAF. At June 2019 there were more than 290,000 DVA beneficiaries in receipt of pensions, allowances and treatment or pharmaceuticals. This included about 184,000 veterans and 110,000 dependants.

The Veterans' Affairs Legislation Amendment (Exempting Disability Payments from Income Testing and Other Measures) Bill 2021 is an important piece of legislation. This bill assists in ensuring some of our most vulnerable veterans will be better assisted, better supported and helped at the point when they require that assistance. We are giving them exactly what they need. It delivers on the government's budget commitments announced in October 2020 and May 2021.

I noted that the member for Gorton talked about the delayed budget and the favoured consultants, dripping with sarcasm. This isn't about having a crack at the government. This should be about doing what we need to do in a bipartisan way for our veterans. I'm pleased that Labor will not stand in the way of this bill passing the House of Representatives.

This bill implements the recommendations of the review conducted by esteemed public servant David Tune into the adequacy of the TPI payments. This bill includes provisions to exempt disability pensioners' income under the Social Security Act. These alterations simplify the support system for more than 14,000 veterans and dependants and negate the need for the Defence Force income support supplement.

There are provisions to remove a means test imposed on rent assistance for certain veterans and dependants. About 6,900 veterans and dependants will now become eligible for rent assistance or an increased rate of rent assistance. This ensures assistance even under the provisions of acts that are passed and changes that are ultimately made as time goes on. Even if a veteran drops, say, $100 that they can't make up on, that, for many veterans, means the difference between having a reasonable life and being on the breadline. It truly does. That is why we know that the veterans' affairs legislation amendment is so critical and so time-sensitive as well.

The bill also includes provisions to clarify the existing disability pension. It's a compensation payment but it should not be confused with other income support measures such as Centrelink's disability support pension. It also provides for the simplification of indexation arrangements for the disability pension, which is presently an overly complicated bureaucratic process. If there is one thing I know and that veterans certainly know it's that they don't want a complicated, intricate, bureaucratic process. They want to know that they are going to be supported without having to go through all sorts of rigmarole and hardship just to get the payments that they so desperately want, need, expect and, most importantly, deserve—because it's their money. They have been sent, by us, by the government, by the Commonwealth, to do a job. They have done that job proudly. They have done that job diligently. They have sacrificed so much. That's why it's so important that this pass the House.

This bill also includes a measure to implement a two-year trial of non-liability rehabilitation. This will enable veterans participating in the trial to access DVA rehabilitation services in a more prompt manner, without the need to make a claim for compensation or to have to wait for the determination of liability.

The government has accepted all of the recommendations of the review undertaken by Mr Tune. If passed, this bill will give effect to changes to meet four of these recommendations. The Defence Force Income Support Allowance will be abolished; and the adjusted disability pension, including the TPI payment and permanent impairment payment, under the MRCA, will be defined as exempt income under the social security law. That is schedule 1. In schedule 2, in addition, the disability income rent test should be abolished. This would simplify payment arrangements and allow TPI veterans who are renting to receive Commonwealth rent assistance.

The bill also gives effect to changes that include the indexation of the TPI payment being changed to index the whole payment all at once rather than in two components. That's schedule 4. This could also apply to the intermediate and extreme disablement adjustment rates of disability pensions. The split indexation mechanism was brought in in 2004 as a result of the different indexation mechanisms in place for the general rate and above general rate components, but it is now redundant as the indexation mechanisms were all brought into line back in 2008.

The bill also changes the terminology and language in legislation guidelines and policy documents. This will mean that the TPI pension will no longer be referred to as a pension but as a payment. Some stakeholders are concerned that the term 'pension' in schedule 3 implies welfare instead of compensation. It's not welfare; it is indeed compensation.

The feedback received by the government when these measures were introduced and announced in the October 2020 budget was that the measures were supported. The proposed legislation before the House today is critical because veterans know how important this is. They know how important every dollar in their account is—it's deserved and needed. We've listened to that feedback, of course. We've brought the implementation forward to 1 January 2022 as part of this year's budget which was handed down in May.

Veterans will not need to apply for rent assistance. DVA will contact those income support recipients who may be eligible, and we will seek up-to-date rent information from them. Once received, this information will be used to undertake the assessment process of rent assistance, with payments commencing on the first pay day following New Year's Day next year.

Finally, on the Senate inquiry recommendation that the government consider increasing the TPI payment, I appreciate what the member for Gorton says. We are constantly in a process of consultation with veterans. We will continue to be the side of politics that listens to veterans and acts on their concerns. We understand full well the service and sacrifice that they have made, both at home and abroad. We will continue to take on board those discussions and that feedback, and that is why we are bringing forward this particular legislation and those particular payments as part of this legislation. We know that it is needed, we know that it is expected and we know that it is deserved.

To veterans: please know that help is always at hand, whether in mental health support or in financial support, because you deserve it and because you have sacrificed so much for and on behalf of our nation.

Mr NEUMANN (Blair) (13:18): [by video link] I'm pleased to speak on the Veterans' Affairs Legislation Amendment (Exempting Disability Payments from Income Testing and Other Measures) Bill 2021. I speak in support of the amendments moved by the member for Gorton. This government has ignored the concerns of 27,000 TPI veterans. The government has ignored the recommendations of a vital Senate committee, which recommended an increase in the TPI payment. This bill is better than nothing. As the member for Gordon has indicated in his speech, there are 6,900 veterans and independents who will benefit from this bill, so Labor won't stand in the way of them receiving some additional assistance.

The bill removes the disability income rent test under the Veterans' Entitlements Act. It's one of three acts that apply in the area of veterans' affairs: MRCA, DRCA and VEA, and VEA applies to TPI recipients. This change will operate from 1 January 2022, so the government's left it very late to assist a small cohort of veterans who need help. These are veterans on low incomes in private rental accommodation who would be eligible for Commonwealth Rental Assistance, who'd receive a high rate of rent assistance, and they'll get a bit of help.

The bill also exempts their disability pension from social security income tests from 1 January 2022, which means that what is commonly called the DFISA, a top-up payment, will be abolished as it's simply not necessary. There's some renaming of the disability pension to the disability compensation payment to clarify that the disability pension is not an income support pension or welfare but a compensation payment. There's an adjustment in terms of combining some separate indexation components and also the establishment of that two-year non-liability rehabilitation pilot program in response to the Productivity Commission review recommendation in relation to cultural change and encouraging early voluntary participation in rehabilitation. I might add that the government's not responded to even half of the Productivity Commission's recommendations in the report that was released on 2 July 2019.

The government advises that the changes to the bill are beneficial and no veterans receiving disability compensation claims will be worse off. I note that the government first announced these changes in the October 2020 budget. Perhaps the government should consider backdating the measure to provide rent assistance to some TPI veterans to October 2020, when the government accepted the recommendations of the Tune review. After all, the government knew it was underpaying TPI veterans, but it's not prepared to compensate them for the long time it took for this legislation to be drafted and eventually passed. It must be said that Labor is supporting this bill because, frankly, it's better than nothing. It's better than anything the government's delivered for disabled veterans to date.

We can't let this legislation go through without mentioning the government's abysmal treatment of TPI veterans over the last eight years. This is what our second reading amendment is all about. The fact is that the TPI Federation has been raising the issue of a TPI payment for several years, and the government's ignored their concerns. They've been the victims of grossly bad acts of faith on behalf of this government.

Before the 2019 federal election, Prime Minister Scott Morrison effectively promised to increase the payment by announcing a review of the TPI pension to be conducted by Mr David Tune, and that would report after the election. The TPI review was really a cynical marketing exercise by a prime minister desperate to win an election, to placate veterans and to ask for their votes before the election. It was a pretend move. In a letter to the TPI Federation in April 2019, on the eve of the 2019 election, the Prime Minister committed the government to the review. He stated in that letter: 'The TPI Federation makes a compelling case in relation to the relative value of the above general rate component of the special rate of disability pension. The fact that TPI veterans are not able to earn an income as a result of their service to our nation means their loss of income during what would have been their working life should be appropriately recognised and replaced.' The Prime Minister said TPI veterans have a 'compelling case'. If ever there was a case of raising expectations, this is it. In fact, in a Senate estimates hearing in October last year, the Secretary of the Department of Veterans Affairs, Liz Cosson, conceded that the Prime Minister's letter had raised expectations that the government would increase the TPI payment and the TPI Federation had made a strong argument for an increase. Ms Cosson admitted that she thought the TPI Federation had made a strong argument for an increase in the TPI pension, but this is not what the government's doing and it's not what this legislation does today.

Following the election, the TPI Federation revealed there was very limited consultation with TPI veterans as a result of the review undertaken by David Tune. Mr Tune met with the TPI Federation only once so they could put their case to him. However, shockingly, the review completely dismisses the group's submissions. They were not even given a copy of the report. The review was then completed in August 2019 but was buried under the cloak of cabinet in confidence until the delayed October 2020 budget. Then, after sitting on the report for more than a year, the government finally announced the response in the budget. Far from increasing the TPI payment, all the government offered was some modest rent assistance to about 10 per cent of TPI veterans. That's what they said at the time: about 2,700 people living in private rental accommodation, leaving most TPI veterans disgusted that they were missing out.

After raising the TPI Federation's hopes before the election, the government went on to dash them after the election. This was a huge disappointment to TPI veterans and shows that veterans who are TPI and other veterans can't trust the Prime Minister or this government. To add insult to injury, in response to Labor's questions in Senate estimates last year it was revealed that these benefits were not due to start flowing until September 2022 while the government made changes to legislation and IT systems. In other words, it would have been many years before even these people, who are acknowledged by the Tune review as being in desperate need of support, would receive any assistance.

When asked by Labor in the hearing what these people should do in the meantime, DVA secretary Liz Cosson said, 'Good question.' It was only after pressure from Labor and TPI veterans that the government brought forward the start date to January 2022. They left it until the very last sitting of this year, 2021, to pass the enabling legislation. They were in very real danger of running out of time to deliver the budget measure from October 2020. It goes to show this government's priorities and the lack of urgency concerning support for TPI veterans. Given TPI pensioners have had to wait for answers since April 2019, when the Prime Minister commissioned the review on the eve of the election, these delays only created more anxiety and frustration amongst TPI veteran communities.

That is why Labor listened to TPI veterans and referred the matter to an independent Senate inquiry earlier this year so that TPI veterans could have their say. The Foreign Affairs, Defence and Trade References Committee inquiry was established by Labor on 18 March 2021 to examine the adequacy of the TPI payment special rate of disability pension and the case for an increase in the payment. The committee included government and Labor senators as well as independent Senator Jacqui Lambie and allowed for an open and transparent examination of the issues and establishment of the facts. The report was adopted unanimously, though I must say the government members played little role in the inquiry.

In this deliberation, the inquiry noted that a number of reviews of TPI payments in recent years, including the Tune review, concluded an increase in TPI payment was not warranted and recommended more targeted assistance instead. However—and this is really critical—the inquiry recognised that these reviews wrongly factored in other benefits, such as service pension and other payments, when considering the adequacy of support provided to TPI pensioners. The committee found that submitters made a persuasive case for a fair and just structural adjustment of the above general rate component of the TPI payment to restore the relative value of the payment and recognise and replace TPI veterans' loss of income. Further, in evidence before the committee DVA officials did not even attempt to defend the government's position and response to the Tune review. DVA officials agreed that the level of compensation for TPI veterans was inadequate.

Based on all these submissions and evidence provided at the public hearings, the committee recommended that the government consider an increase in the TPI payment and consider the next exact level of the increase, yet the government has failed to do so. Labor welcomes the report. We have called on the government to do better and more. The government has failed to respond to the unanimous recommendation in a way that satisfies TPI veterans. The government has given platitudes in relation to the issue. There's an election coming up. There's a budget in March next year. If the government wants to take action, as it should, it should listen to the voices of TPI pensioners and give them the increase they need and deserve. As this amendment sets out, Labor condemns the government for its failure to accept the recommendations of the Senate inquiry and to listen to the voices, the cries and the pleas of TPI veterans.

On behalf of the Labor opposition, I call on the government to do the right thing. We'll support this legislation today, but—

The DEPUTY SPEAKER ( Mr Rob Mitchell ): Order! The debate is interrupted in accordance with standing order 43. The debate may be resumed at a later hour.

Mr EVANS (Brisbane—Assistant Minister for Waste Reduction and Environmental Management) (16:41): I move:

That the amended resolution of appointment of the Select Committee on Regional Australia be further amended to replace 'final report no later than 30 December 2021' in paragraph 2 with 'final report no later than 1 April 2022'.

Question agreed to.

Mr THOMPSON (Herbert) (16:42): I would like to start by acknowledging all the men and women around the nation who have worn the uniform or continue to wear the uniform in service to this nation, and I want to acknowledge their families, who are the backbone of the defence community. Our soldiers know their mission remains fixed: determined, unbreakable, it is to win our wars. Almost everything outside of our military career will not hold such gravity as this vital dedication and service to this nation. Our soldiers are the ones we look to to train, to fight. Their skill set is in the profession of arms; their will to win, the sure knowledge that there is no substitute for victory.

There are more than 31,000 defence personnel, veterans and their families living in Townsville. Townsville is a proud garrison city with a long military heritage. We have served the Australian people for many years, in many wars, through many natural disasters. We have had soldiers killed in action, wounded in combat, injured in training, and those that have died by suicide. Improving the wellbeing of veterans and their families should not just be words; it should be enshrined in all of us here, every day, to better support the people that have fought for our freedoms, our democracy, our way of life—the people that we put in harm's way to ensure that we can sleep safely and soundly in our beds at night.

I deployed to East Timor and Afghanistan. I witnessed firsthand the commitment and dedication of the men and women of our armed forces—commitment and dedication on the battlefield, which is difficult for the community who are left behind to see and fully understand. We built schools for girls, wells for community; we fought the enemy. Just recently we had our soldiers from Townsville—from the First Battalion, Royal Australian Regiment, my former unit—in Afghanistan on an extremely dangerous rescue mission. Our brave men and women answered the nation's call to go into harm's way, where the rule of law has failed, and to rescue people that helped us in Afghanistan. This mission was like no other. We haven't seen an operation of this magnitude for a very long time. They did a fantastic job and an honourable job. We as a grateful nation owe a great debt to our soldiers. We have also seen just recently soldiers from the 3rd Battalion, Royal Australian Regiment, based in Townsville deployed to the Solomon Islands to help the people of the Solomon Islands during civil unrest.

Some of the best times of my life were in the Defence Force, and also some of the hardest challenges I've faced were when I was transitioned out. Our defence family, whether we served together or just share that experience, are people that I call family—people I represent here in this place and people who look to me to ensure their voices are heard. For those who have been injured from their service, we must do better.

This bill, the Veterans' Affairs Legislation Amendment (Exempting Disability Payments from Income Testing and Other Measures) Bill 2021 does a small bit in doing better. This bill implements the recommendations of the review by Mr David Tune. This bill will allow veterans on this compensation to access housing assistance, which they hadn't been able to do before. These provisions are to remove the means test imposed on rent assistance for certain veterans and dependants. Many will now be eligible for rent assistance or an increased rate of rent assistance. It is to our nation's shame that veterans would be homeless, sleeping rough or not able to get rent assistance. So this bill goes an extra step in the right direction to ensure that the people we in this place call on to do our bidding can get the supports that they deserve. Rent assistance is a supplementary payment to the service pension, income support supplement and veteran payment recipients who pay private rent that exceeds a certain threshold. Disability pension and permanent impairment payment recipients have these compensation payments taken into account in the calculation of any rent assistance paid with the service pension, income support pension or veteran payment. These disability compensation payments can reduce the rent assistance payable if an individual's compensation payment rate exceeds a certain threshold.

This bill simplifies the absolute complexity of what people have to go through. This is to really streamline things and make it easier for our service personnel and our veterans to get the help they need. It is clunky. The opposition agree. We on this side agree. This has been clunky for a long time, and it has been complex. This bill is to help streamline the processes for our soldiers and our veterans, the ones who could be overseas right now, who one day may fall on hard times and need assistance through rent assistance.

This bill also includes a measure to implement a two-year trial of non-liability rehabilitation. This will enable veterans participating in the trial to access DVA rehabilitation services earlier, without the need to make a claim for compensation or await a determination of liability.

The changes relating to disability compensation payments will cost $33.3 million. Who cares, to be honest? There is no figure or number that needs to be thrown around when we are talking about supporting our veterans and our soldiers. When it comes to supporting those who support us through wars, from wars before my time, before I was born, to ones I have been involved in to ones that could potentially happen in the future, there is no number.

The purpose of this bill is to exempt certain disability pensions paid under the VEA, the Veterans' Entitlement Act, and the MRCA, the Military Rehabilitation and Compensation Act, from the social security income test. Removing an income test that applies to rent assistance paid to some veterans' disability pension receipts will allow those receiving higher rates of disability compensation to receive higher rent assistance. There are changes to references to 'disability pension' in the VEA to the term 'pensions by the way of compensation to veterans and their dependants'. You can already see where we're going here. This is clunky, right? So streamlining this will make it a lot easier for veterans who are looking at this bill to understand it and to understand what they're entitled to. It will also help the department and the states that we'll be working with to really understand it. Not everyone's a veteran, not everyone has served, and not everyone fully understands the difference between when we're talking about compensation and when we're talking about pensions. This makes it a little bit easier.

I think establishing the pilot program, or the trial, is a good step in the right direction, but I'd like to see that trial become fixed. Once again, I don't want to see a trial happen and then us try and wind anything back. I think we should be opening the gamut of services to our bravest. The people that put on the uniform, our brave men and women, do it every day. And you hear stories—not just overseas but inside Australia—like when the floods happened in Townsville and soldiers' houses were flooded. They didn't even go to their houses to remove their stuff, because they were too busy helping someone else down the road. It's a selfless sacrifice to your community and to your nation, to always put someone else first and the community first. This bill is about putting our people first, the ones we ask to go into harm's way—the ones we ask to go to where the cyclone is and clean up, the ones we ask to go and help out with COVID-19 Assist, the ones we ask to go and help out with floods and natural disasters. This is about supporting our soldiers.

One thing that I'll leave on, and I'll depart on here, is that it's okay not to be okay. It's okay to have a bad day, it's okay to have a mental illness, but it's not okay to suffer in silence. We must change how we view and how we speak and how we act when it comes to mental wellbeing, when it comes to mental illness, when it comes to suicide prevention and stigma. We must, in this place, be leaders in that. Debating, and going back and forward, is not what I'm talking about. What I'm talking about is having the courage to stand up and support each other when the bad times happen. We all have them here. We all miss our families; we've all had lockdowns, like our communities have. But we, in this place, need to be the change agents and be leaders in our community, and say, 'It's okay if you're not travelling okay, but you must speak to someone. You must.'

It's an ever-changing world and we have high rates of suicide in the veterans community, but I want to see leaders in this place work together to ensure that the stigma is gone. Stand up, put your hand up, if you're not tracking well. That's cool; there are places where you can get help.

Mr ROB MITCHELL (McEwen—Second Deputy Speaker) (16:52): It's a pleasure to follow my friend the member for Herbert. We share a lot of very similar views on this stuff. It is so important, and there should be no division between anyone when it comes to this.

I rise to support our Australian veterans. From the outset I will say that Labor will not oppose this legislation, as it will improve assistance currently available to many disabled veterans. The parliament owes a duty to the men and women who serve our country in uniform. These Australians place themselves in the path of danger so the rest of us don't need to. They make immense sacrifices so that we can all live a safer life. Owing to the significance of the sacrifices they have made, we must ensure that our care for service men and women extends beyond their time in uniform.

The bill aims to simplify and better target support for the most severely impaired veterans. This bill is in response to a review of the TPI payment conducted by Mr David Tune. As you know, Mr Deputy Speaker Vasta, Mr Tune was commissioned by the Prime Minister on the eve of the 2019 election to review the TPI payment. In his investigation, Mr Tune highlighted the disadvantage faced by many TPI veterans in private rental arrangements. The bill implements the recommendations from the Tune review and will simplify the payments and related administrative arrangements for veterans. It will do a number of things to increase the support provided to severely impaired veterans. It will remove the disability income rent test under the Veterans' Entitlements Act and allow some TPI veterans on low incomes in private rental accommodation to become eligible for Commonwealth rent assistance or receive a higher rate of CRA.

The bill also exempts the disability pension from the Social Security Act. This means that the existing Defence Force Income Support Allowance top-up payment can be abolished, as it's no longer deemed to be necessary. The bill will also combine separate indexation components for the extreme disablement pension adjustment and the intermediate rate of special rate pensions, the TPI payment, into one from September 2022 and establish a two-year non-liability rehabilitation pilot program in response to a PC review recommendation. Importantly, this bill will also rename the disability pension to the disability compensation payment. That clarifies that the pension is not an income support pension or welfare, a term the government likes to use, but a compensation payment—an acknowledgement, if you like, of the service that these men and women have provided that led to their impairment.

Whilst these changes are undoubtably important and will provide some benefit to the severely impaired veterans who they affect, we cannot pretend that this bill is enough. The government has been dragged kicking and screaming to many of the reforms presented in this bill. The Australian Federation of Totally and Permanently Incapacitated Ex Servicemen and Women was dismayed by the government's response to the Tune review. In particular, the measures to extend rent assistance were criticised by stakeholders, as they were estimated to only benefit around 10 per cent of TPI veterans. The TPI Federation has advocated for an increase in the TPI payment of around $10,000 a year for all TPI veterans in order to provide adequate assistance.

Furthermore, the rent assistance measure was originally scheduled to commence on September 2022. However, following pressure from Labor and the TPI Federation, the government backflipped and brought this forward to January 2022. It's important that they've done that. In response to the TPI Federation's concerns about the Tune review, this year Labor initiated a Senate inquiry into the adequacy of the TPI payment. That recommended an increase in the payment. However, in its response tabled on 7 October this year, the government ignored the recommendation and instead opted to do nothing.

It is clear that the government is not fully committed to providing the necessary support to severely impaired veterans. Whilst the changes in this bill are based on common sense, it's disappointing that the government has taken this long to implement them. The bill that has been proposed by the government reeks of tokenism. Labor will not oppose the bill. It's supported by Labor and stakeholders, as some change is better than none. We are not going to be the ones who put average aside because we seek perfection. We can't stop here. What we need to do is actually get the government to stop playing tokenism with veterans. Do the right thing; they deserve it.

A Labor government will seek to implement real and meaningful changes to the way in which we as a country support severely impaired veterans. An Albanese Labor government will offer more than the half-baked tokenism that's been put forward in this bill. As I said, we're not going to oppose this legislation, as it will improve and streamline assistance to veterans and improve their wellbeing. However, we know it is not what TPI veterans want. We know that what they want is a proper increase in the payment.

We do, however, condemn the Morrison government for their failure to accept the recommendation of the Senate inquiry that the TPI payment be increased. Such an increase would ensure our most disabled veterans are not left behind, something you'd think would be so important to every member of this chamber and the other place. For years, stakeholders have been arguing for an increase to the TPI payment. The government's response to a bipartisan inquiry was a slap in the face for Australia's 27,000 TPI veterans. It just goes to show that this is a government that's all about announcement; when it comes to delivery, they run and hide. This has a big impact for Australian veterans.

What is most disappointing is that before the 2019 election, the Prime Minister effectively promised to increase the payment, but since then he has deliberately and wilfully ignored the pleas of TPI veterans—and his own colleagues' advice—and failed to deliver on that. It is a pattern that Australians have become used to—all announcement, no delivery—except this time it's really impacting the people that this government say they care so much about.

After sitting on this review of the TPI payment for more than a year, Prime Minister Scott Morrison announced in last year's budget that he would only provide rent assistance to a small proportion of TPI veterans. That means most veterans will miss out. We're not going to stand in the way of this legislation, but, along with many TPI veterans, we believe these tokenistic measures are not good enough, and our veterans and their families deserve much better.

When we look at this bill it's clear that only Labor is truly on the side of Australian ex-service men and women. It's clear that the Morrison government is only interested in its own image. The modest reforms put forth in this bill do not provide the necessary assistance to veterans and their families. All Australians deserve more than the Morrison government, especially our veterans. These men and women have made and continue to make immense sacrifices for our country, and they deserve full and unconditional support—not only those who have been in wars past but those who are going to be in the chapters of war that we face into the future. It's time we got things right.

Something I'm very, very passionate about is supporting our veterans. I think back to many times when we've had absolutely horrid discussions with DVA, and now we can't even get a response from the laziest minister that God ever put wind into. We need to have veterans looked after properly, efficiently and correctly. This bill that we see today before the House will simplify and streamline assistance to veterans and improve their wellbeing. It is better than nothing. I'm sorry that it is only a little bit, but we will continue to push and to support our veterans.

I make it very clear: the Morrison government should not construe the support of this side of the House as validation of the pitiful efforts they have provided veterans. Veterans and their families have not been a priority of this government. Only Labor is on the side of Australian veterans and their families. We know what they've been through, and we know what they deserve. They deserve not to be cast aside by this government. As I said, we will not oppose this bill, but the government should be on notice that we are not going to continue to allow them to make tokenistic gestures to our veterans in their time of most need and that we will continue to support them to get everything that they truly have earned and deserve.

Mr BROADBENT (Monash) (17:03): Thank you for this opportunity to address the parliament on the Veterans' Affairs Legislation Amendment (Exempting Disability Payments from Income Testing and Other Measures) Bill 2021. Every now and again there is a moment in the parliament that should not be missed, where history is made, where a change comes, and we as parliamentarians need to note it. With the retirement of the member for Lingiari, Warren Snowdon, our last connection to Old Parliament House will be severed.

Warren Snowdon was the Minister for Veterans' Affairs from 2010 to September 2013. He achieved two things I would like to acknowledge, amongst many other achievements. He moved the veterans' affairs equivalent of Five Eyes from officer level up to ministerial level, so the issues were acknowledged as far more important than the parliaments of the day were recognising. Subsequently, the second ministerial meeting was held here in Canberra, and that was Warren's work. From 2010 to 2012, Warren focused on the eminent persons group to start planning the Gallipoli event of 2015. He knew that they had to look ahead and they had to be three years out to make this event the very important event that it was. To his credit, the member for Lingiari understood the value of relationships. To underpin such important work he twice visited Turkey and France. His foresight in dealing with the mayor of the province of Villers-Bretonneux was seen when he happened to have a signed Wallabies jumper at hand to give as a gift to the mayor.

Closer to home, according to Warren's return speech, Warren wondered if having a child at the height of his 2013 campaign would grab the granny vote and some of the women's vote. I have heard since, though, that the women of his area rallied and put out the cry 'Support Elizabeth; vote Warren go back to Canberra'! He did return, and his list of parliamentary achievements is two A4 pages of tiny writing, so I won't even try to go through all the work that he's done in the parliament, but I would like to highlight some things.

In August 2013 he launched the online suicide prevention and mental health resource Operation Life online. In June 2013 he improved military compensation arrangements in response to the 2011 review of military compensation changes to the Military Rehabilitation and Compensation Act 2004, including increased permanent impairment compensation and DVA white cards for former ADF members with long-term health conditions accepted under the Safety, Rehabilitation and Compensation Act. He increased the compensation for dependant children of deceased ADF members. In May of 2013, the DVA Veteran Mental Health Strategy was launched, with proposed extended arrangements allowing access to mental health supports—here we go again—and supports prior to compensation claims post discharge and GP assessments. It also extended the veterans and veterans families counselling service to those with certain peacetime service.

In May 2012, funding was announced for the Anzac centenary commemorative program to run from 2014 all the way through to 2018. In May and June of 2012, the government provided assistance to Bomber Command veterans travelling to London for the dedication of the new Bomber Command Memorial on 28 June 2012. In February of 2012, the first national observance of the bombing of Darwin was held on the 70th anniversary. In December 2011, Australian personnel involved in maintenance, transport or decontamination of aircraft used in the British nuclear testing program became eligible for cancer testing and treatment. In September 2011, the prisoner of war recognition supplement was introduced. It was paid to veterans who were prisoners of war and to civilian detainees. It was paid at the rate of $500 per fortnight and indexed in line with the CPI. It was not income for income tax purposes or for the purposes of social security or veterans entitlements income checks. In May of 2011, the Coordinated Veterans' Care Program was introduced to provide ongoing planned and coordinated primary and community care for gold card holders who have chronic conditions and complex care needs and are at risk of unplanned hospitalisations.

Sharon Bird just gave her valedictory speech, and I've heard the member for Lingiari speak to the parliament. In March 2011, he released a military compensation review, a review of the Military Compensation and Rehabilitation Act 2004; and, in 2010, members of the Australian Protective Service who patrolled the Maralinga site up to June 1998 became eligible for cancer testing and treatment. He has the serious dedication around mental health and condition of the community that veterans' affairs ministers become a part of—part of their family. For all his hard work, Warren is to be congratulated. The parliament is better for it. Having said that, I will refer to his first speech in just a moment.

The era that Warren first joined the parliament in—the Old Parliament House—was totally different to the expanses of this Parliament House. Everybody was connected together in a very small group of people—it's only what I've been told—and so the interaction between members, staff, ministers and backbenchers was fierce and unrelenting for the whole of the time they were there. COVID has had us so disconnected in this House with the social distancing and all the measures that we have had to deal with, whereas the old House was a very small unit, and the interaction of parliamentarians then was quite different to what it is today.

We have someone coming from that era still here in 2021 and having suffered a loss. I identify with the member for Lingiari, because I have been a 'oncer' in this place twice, and I know how hard it is to come back. I know how hard it is to stay here in a marginal seat, like the member for Lingiari. There are many people—I'm sure the member for Lingiari won't talk about them—who would be very happy if he weren't in this place or if he had been booted out long ago. You've got to fight for your position, you've got to fight to stay here, it's hard to come in, it's difficult when you are in here and it's very easy to be thrown out. So you've got to be a dedicated parliamentarian and have a commitment to the people that you serve, the people of this nation, the party you represent, the caucus you are a part of and this House of Representatives—this place where the decisions for the nation are taken. It's a privilege for all of us to be a part of that decision-making process for the nation in good times and bad.

The member for Lingiari said in his first speech:

This nation cannot pretend to wear the mantle of maturity until the indigenous rights of Aboriginal Australians are given formal recognition and the demands by Aboriginal and Islander people for compensation for lands stolen and for social and cultural disruption are addressed. In my view, this should involve appropriate amendments to the Constitution.

I say to the member for Lingiari: we stand here today, you and I, in unison on that need to change the Constitution and recognise the importance of the Indigenous people in this nation. Further, he said:

Until we give back to the black man just a bit of the land that was his, without strings to snatch it back, without anything but complete generosity of spirit in concession for the evil we have done him—until we do that, we will remain what we have always been so far, a people without integrity; not a nation by a community of thieves.

Pretty strong words for a first speech in this place! But those words were written and spoken by someone who had a clear sense of responsibility of representation.

I wish the member for Lingiari and all who travel with him, his family and friends, the very best in his retirement. May you go well and may the sunsets of the Northern Territory be a part of your days.

Mr SNOWDON (Lingiari) (17:14): I don't know what I do here. I'm highly embarrassed by those wonderful words, and I thank the member for Monash for that wonderful contribution. I had prepared a speech about veterans affairs, which I probably won't use, but I just want to say to the member for Monash and other members in this place that I'm not on my own here. Right across this parliament, on both sides, from all quarters, we have people of commitment and people of character, some of whom we agree with some of the time and some of whom we disagree with all of the time, but what we can be assured of is that, by and large, their motivation is for public service and to represent their communities in the best possible way. I'm not sure whether I'll give a valedictory. I may, but I'm not quite sure how I would address the words of the member for Monash in a way that could do him justice. There was no need for you to make that contribution in the way you did, and I'm very, very grateful. Thank you.

I will reflect for a moment on what it was to be Minister for Veterans' Affairs and Minister for Defence Science and Personnel. I was given what was, I think, a great responsibility but a wonderful opportunity, an opportunity to meet and be part of a broad defence and veterans family. My father had been a serviceman and was TPI. His father and his father's brothers, five of them, went to the First World War. My father's brother went to the Second World War. My uncles went to the war. So we had a tradition of service. I was in the Citizen Military Forces, a cut-lunch soldier, for a few years. So to be given the awesome responsibility of being Minister for Veterans' Affairs was a huge privilege and a dreadfully great honour. What I found was that, by and large, when we worked across the chamber on issues which related to veterans there was very little difference in approach. Michael Ronaldson, as you'll recall, was the shadow minister for a period. It was a privilege to be part of that family and to understand the needs and wants of veterans, understand their service, understand the difficulties they and their families confronted as a result of their service, and understand our nation's obligation to accept responsibility for those people as veterans from the day that walked into Kapooka. The day that they sign on is the date that we sign up to look after their interests for the rest of their life. That doesn't mean we have to be sitting on their shoulders, but clearly, as we've seen, particularly after a very intense period of war in the Middle East and Afghanistan, we've hurt people. We as a nation have a responsibility to make sure that those people are given every opportunity to heal. I commend the government for the Royal Commission into Defence and Veteran Suicide. I think it's very important.

I talked briefly about the privilege of being a minister. I mentioned Villers-Bretonneux; the privilege of giving the Anzac morning address at Gallipoli or V-B; and being involved in the identification of a mass grave at Fromelles. Working with the French and British governments for the exhumation and then the identification of those First World War heroes and then having them buried in a dedicated war service gravesite at Fromelles was really very important. It could not have been done without the tireless work of the Department of Defence's Army History Unit and the Department of Veterans' Affairs. Similarly, I accompanied some old special forces soldiers, who had served in Vietnam, to Hanoi. The purpose of this trip was to receive the remains of the last Australian soldier missing in action, Private Fisher, and we were able to accompany him home. That was an enormous privilege and a great honour, and I think it helps me, at least, come to terms with the reality of war: sacrifice, comradeship, struggle, hardship, and the need for us to forever recognise that the hardship, the struggle and the sacrifice are borne not only by those soldiers themselves but by their families.

So, when we look at this legislation, we use just one marker: how does it make life better for someone? To me, it appears that this type of legislation that we are talking about today will make life easier. We will have our differences about the issues of the TPI Federation and their requests for more resources, and we can have those discussions, but what we have to do is agree that across the parliament we have but one responsibility: to look after them and to make sure they get the best opportunity and the best service.

I think my comrade next to me may know the figure, but I think we've had in excess of 40,000 soldiers, sailors and air men and women serve in our longest war. When I finished as a minister in 2013, we were only halfway through. We have the issues which have emerged now and which are the subject of the royal commission, and we have an enormous responsibility to address those issues. But I have to say that the motivation of those people who are servants of the community in the Department of Veterans' Affairs should really be understood. They do their utmost, given the restrictions we place upon them, to do the best they possibly can for veterans.

I know I have spent very little time talking about the legislation, but, having felt quite embarrassed, I thought I should respond in some way. I again thank the member for Monash. Member for Monash, as I said in a contribution earlier today about you, I hope you will reconsider your thoughts about walking away from the chair of the Privileges Committee. It's very important that you stay there, and I know that's a feeling which is shared across the parliament.

Mr Deputy Speaker, I won't take up any more of your time. Thank you very much.

Mr GOSLING (Solomon) (17:25): I rise to speak on the Veterans' Affairs Legislation Amendment (Exempting Disability Payments from Income Testing and Other Measures) Bill 2021. I want to join the member for Monash in reminding all honourable members of this House that we are indeed, as this parliament draws to a close, at a special and particular time in the history of this parliament, with the member for Lingiari leaving. I was reminded of his father yesterday, who served in the independent companies in World War II, with the passing of Jim Ellwood. Jim was the last veteran from the island of Timor, during World War II. He served with the 4th Independent Company. From this, we remember a couple of things. One is that the Department of Veterans' Affairs is providing services not only to veterans of the Second World War but, through the generations to the current day, to a young Australian soldier, sailor or aviator who is injured, who would need some support, who is in service as we speak.

I want to thank my friend the member for Lingiari for all those veterans' lives he made better during his service as the veterans affairs minister. Whether it was here in Australia or overseas, he represented us with distinction. I know so many people whose lives he made better because of his work with the department and because of the ex-service organisations getting good results. I will mention one person from my electorate. He is someone who is a big character in the Northern Territory who served with the Department of Defence, in Maralinga. He was left to cover all his own medical bills as he fought cancer and had different procedures. To receive that acknowledgement, and that gold card, made all the difference to him. Thanks, Woz, for all you did for the veterans community and all those families. I support that sentiment 100 per cent—that making life better for our veterans and their families is the focus, and that that should never be lost in the back and forth of this place.

I want to say upfront that I support the intent of this bill, and Labor is supporting it. Later I will make some comments about a veteran that I want to bring to the attention of the minister and the House. I am glad the government has responded to the calls of veterans and their families, and of federal Labor, to implement the measures that were first announced in the 2020-21 budget and were due to commence in September this year. That time frame, as I understand it, has been brought forward. In particular, around rent assistance, key elements of the measure contained in this bill will commence on 1 January next year. This is positive news. Labor is of course supporting them, particularly as there is some urgency to get this legislation passed so that they can start on 1 January. I won't take my whole 15 minutes, so that we're able to crack on with the work that needs to be done.

As the member for Lingiari mentioned, there are those who have been speaking out loudly. Of course TPI veterans would prefer an increase in the TPI payment, and the TPI Federation has been campaigning for that. The Prime Minister did commission the Tune review just before the last election, and I hope that he hasn't raised the TPI Federation's expectations about an increase in that payment by telling them they had a compelling case, without being willing to follow through with that. I guess we'll see in the coming months. Some TPIs have obviously seen it as a breach of trust, seeing that their wishes have been ignored, but it is why Labor—in its desire to make sure that our veterans do have the government held accountable—set up an independent Senate inquiry. That inquiry found that the TPI Federation did make a compelling case and recommended an increase in the TPI payment. I would point those opposite to the comments of even some of their own members such as former General Jim Molan, who's also supporting the TPI case.

On top of this, we heard in Senate estimates recently that the department is struggling to deal with a huge backlog of veterans' claims, with 68 per cent of disability pension claims yet to be finalised as of April this year. I can tell you that a wife of a currently serving member has contacted me—and I'll be writing to the minister—to say that, after in excess of 530 days, he still hasn't had someone allocated to his case and he is, obviously, still waiting for a determination as he transitions. That period of transition is really important. I think we're going to hear out of the royal commission story after story about how some of our veterans have declined in terms of their mental health through the long periods of waiting. Let me make it clear, though, when I say this I'm not taking anything away from the passion and hard work of the employees of the Department of Veterans' Affairs—not at all. But governments make decisions about resource allocation, and, obviously, what needs to happen is that resources are allocated so that we're dealing with these cases of our veterans much more quickly than we currently are and there's more support.

The chair of the royal commission has also called out the government for pre-empting and duplicating the work and recommendations of the royal commission with this latest review that's been talked about recently, with McKinsey, so I just encourage the minister to ensure that we're not duplicating effort and we're not retraumatising. And, as I did in the other chamber just a little while ago, I call on the minister and the government to make sure that there are 24-hour human resources, mental health resources and counsellors for those families and veterans involved in the royal commission to access. Often we find that after hours is when the black dog can visit, so I think it's important during these hearings that there is 24-hour care.

As I said, Labor supports this legislation. We do believe that our veterans and their families deserve the best support. I want to, again, thank all of those who are working on this very important royal commission, because it will, I'm sure, identify trends where those patriotic men and women of the Defence Force fall through the cracks and identify how that has happened so that we can, in a systematic way, make those changes that mean that we will give them what the member for Lingiari said during his speech, which is: through what we do, make life better for our veterans and their families.

Ms CLAYDON (Newcastle) (17:35): It gives me great pleasure to be able to rise to speak to the Veterans' Affairs Legislation Amendment (Exempting Disability Payments from Income Testing and Other Measures) Bill 2021 this evening, although I do seek indulgence just to reflect on some of the contributions made by previous speakers and, particularly, my friends the member for Monash, the member for Lingiari and the member for Solomon. I want to particularly, this being perhaps the last time I'll get to speak on a bill with my dear friend and colleague the member for Lingiari, acknowledge his exceptional service and work for the veteran community. I really appreciated the speeches beforehand. I have often worked with the member for Lingiari on a lot of First Nations issues, learning from him. When I have travelled with him throughout Australia when we have been doing committee work, his knowledge of defence and the area of veterans affairs in particular has been second to none. People everywhere have acknowledged that. He is so exceptionally well known. I think that those three years from 2010 to 2013 when he was Minister for Veterans' Affairs really cemented his legacy in this area. It is a legacy that is immense, and I for one really appreciate that—and I know many other colleagues in this parliament do too. I have been in denial for some time that he is in fact retiring. I find it hard to believe. But I did not want this evening to pass without acknowledging his extraordinary work, to thank him for that and to acknowledge that legacy. It's one that he should be immensely proud of.

Labor is very much on the side of Australian veterans and their families, and that's why we will be supporting this legislation this evening. This simplifies and streamlines assistance to veterans and will improve their wellbeing, and nobody in this place would be opposed to that. The bill addresses recommendations made by Mr David Tune AO PSM in his 2019 review of the totally and permanently incapacitated payment, the TPI payment. The government's had the Tune review's recommendations and the Productivity Commission's 2019 report on a better way to support veterans. I am a little disappointed that it is 2021. Both those reviews are a couple of years old now. Sometimes the wheels in government move slowly, and this is very much one of those examples.

The government first announced these measures that we are seeing in the bill tonight back in the 2020-21 budget, and its intention to bring forward these important changes from 20 September to 1 January 2022 was flagged in last year's budget. That was following immense pressure from TPI veterans, with the support of the Australian Labor Party.

These reforms will simplify the administration of some payments for veterans and their dependants. This will be done by exempting disability payments from income testing under the Social Security Act 1991. It will simplify arrangements for some 14,000 veterans and their dependants. That's a good thing. The government will also increase access to rent assistance for our most disabled veterans. This will benefit some 6,900 veterans and their dependants. Specifically, the first schedule will implement the government's commitment to exempt the adjusted disability pension, defined in the Veterans' Entitlements Act, from the income test under the Social Security Act. These are important changes. This will remove the need for the Defence Force Income Support Allowance, or DFISA. Introduced in 2004, that allowance was paid as a top-up to ensure that veterans who received an age pension under the Social Security Act were not financially disadvantaged. Changes in this schedule will ensure veterans will receive the same payment as before but administrative processes will be much simpler. While it's an administrative change, this will make the allowance redundant, and this bill will remove all relevant references to that from the Veterans' Entitlements Act.

The second schedule will remove the disability income rent test from under the Veterans' Entitlements Act. That will mean disabled veterans will now have access to the same rent assistance as those who receive it via Centrelink. It'll increase rent assistance payable to veterans or enable some disabled veterans to receive rent assistance for the first time, and that is important. The disability income rent test results in severely disabled veterans receiving less rent assistance than those with a lower-level disability. In particular, this measure will benefit totally and permanently incapacitated veterans, who presently do not receive any rent assistance due to the amount of compensation they receive. That's been a gross inequity for some time. Schedule 4 will remove references to the term 'disability pension' in the Veterans' Entitlements Act.

Labor supports this legislation. As I said, it'll improve and streamline the assistance that we can deliver to veterans and ultimately improve their wellbeing. However, we know it's not what most TPI veterans wanted. The reality is that most actually want an increase in the actual TPI payment. The Australian Federation of Totally and Permanently Incapacitated Ex Servicemen and Women, the TPI Federation, has been raising this issue about the inadequacies of the TPI payment for many years now. But the government has continued to ignore those concerns. Labor referred the issue of the adequacy of the TPI payment to a Senate inquiry earlier this year so that TPI veterans could have their say, have a direct line to lawmakers of this country, to tell them of their lived experience of this payment.

The Senate Foreign Affairs, Defence and Trade References Committee inquiry into the TPI payment reported on 1 July this year and recommended that the government consider an increase in the payment. At the time, Labor called on the government to respond to the committee's unanimous recommendation. So this wasn't just Labor's call here; this was a recommendation backed by government members on the committee. We asked that the government respond to that unanimous recommendation, which would ensure that most disabled veterans would not be left behind. Surely, that is a good thing. Surely, that is something this government would want to support. However, in its response to the inquiry, which the government tabled on 7 October, all that the Morrison-Joyce government could say was that it noted that recommendation and would take it into account when considering future policy options for the support for TPI veterans.

That turned out to be a very huge slap in the face of the 879 TPI veterans in the Newcastle and Hunter Region, and it just goes to show that this is a government that is still all about the announcement but not actually coming through on delivery. This makes Australian veterans very nervous. It was another blow for those long-suffering ex-service men and women who have long advocated for this important change to be made to remedy the existing inadequacy of the TPI payment. Before the 2019 election the Prime Minister totally raised the hopes of everybody at the TPI Federation when he said that he wanted to increase the payment and he was going to do that by commissioning this Tune review. But then he dashes all of their hopes post election with this very flawed response to the review that we now have before us. After sitting on the report for more than a year—again, another pattern very common in this government now—the Prime Minister announced in last year's budget that he would only provide rent assistance to a very small portion of those TPI veterans, perhaps around 25 per cent, leaving most disgusted because they were going to miss out. In response to Labor's questions in Senate estimates last year it was revealed that these benefits would not start to flow until September 2022—September next year—while the government made changes to the legislation and various IT systems that needed changing.

Thankfully, following pressure from Labor and those TPI veterans who turned up again to try and be strong advocates for the people they're representing, the government brought forward those measures in this bill now to January 2022. But they're cutting it very fine to get them passed. We are just knocking on the door of December now and the government wants these in place in January. So Labor is not going to stand in the way of these measures because we want to see at least some assistance being delivered, however modest or indeed tokenistic it might seem to some TPI veterans, and who can blame them for that assessment? We don't want to get in the way of this very modest form of assistance for those most deserving former Defence personnel. But we do condemn the Morrison Liberal government for its failure to accept the recommendation of a Senate inquiry and its appalling treatment of TPI veterans over the past eight years. I would acknowledge that there are some government members who are trying to advocate for this matter, and I say all power to you, but we've not seen any actual response from the government that is going to really cut it for the TPI veterans.

We've got a Department of Veterans' Affairs that's struggling with a huge backlog of TPI pension claims. It's really just not good enough that our veterans and their families are having to, first, be disappointed with inaction, and, second, be confronted with a department that is probably not resourced enough, I don't think, to be able to actually get through some of the claims that it has in its system. I note on that matter that ex-service men and women in my community are still very concerned about the VAN office in Newcastle. I want to thank my local veteran community for their very strong advocacy. The last few months have been very tough on veterans, with the cancellation of local Anzac services; the withdrawal from Afghanistan, which was really triggering for many, many Defence ex-service men and women; and of course the release of the Brereton report. I think that's why it is critical that this Morrison government reopens the VAN office in Newcastle, which still remains closed, as a matter of priority. The Minister for Veterans' Affairs should be reassuring local veterans in my community that this government will not be making any moves to close that VAN office permanently because that is what is worrying veterans right now. I won't stop fighting for this issue. It is the very least we can do to honour those who serve us, to ensure that they have a place to come and be treated with dignity and have their concerns addressed.

Finally, I want to acknowledge the extraordinary efforts of our ex-service organisations in Newcastle generally. As I said, it's been another really tough year for veterans. I want to give my personal thanks to the TPI Association at Wallsend; the Newcastle and Hunter Region Vietnam Veterans; the RSL sub-Branches of the City of Newcastle, Merewether-Hamilton-Adamstown, Lambton-New Lambton, Wallsend and District, Shortland, Waratah-Mayfield-Islington and Stockton. I know the work you do each and every day to honour those who you have lost and to care for those who remain, and I do want to put on record my thanks. I also want to acknowledge the Hunter Anzac Memorial Ltd; the RSL Coffee Pot Day Club in Merewether; the WRANS Naval Women's Association, Hunter Region; the Gallipoli Legion Club Preservation Group; the Newcastle War Widows Guild Club; the Wallsend Diggers; the RAAF Association; the City of Newcastle Anzac Day Committee; Newcastle Legacy; the Newcastle branch of the National Service and Combined Forces Association of Australia Inc; the Naval Association of Australia; Newcastle N16; Open Arms Veterans and Families Counselling; and the many other service organisations which do their utmost every day to honour those who have served. It's been an especially challenging year for everyone. I certainly hope that 2022 is much kinder to you all. Take care, and best wishes. (Time expired)

Mr KEOGH (Burt) (17:50): Labor is on the side of Australian veterans and their families. That is why I and Labor will support this legislation that will simplify and streamline assistance to veterans. This will improve their wellbeing. Life has been made far too difficult for veterans and their families—individuals who have put their lives and wellbeing on the line in the interests of our nation. It is up to us to support them following their service. That's not something that has been adequate to date.

The Veterans' Affairs Legislation Amendment (Exempting Disability Payments from Income Testing and Other Measures) Bill 2021 addresses recommendations made by David Tune AO in his 2019 review of the totally and permanently incapacitated payment, or the Tune review, as well as the Productivity Commission's 2019 report A better way to support veterans. These reforms will simplify the administration of some payments for veterans and their dependants. This will be done by exempting disability payments from income testing under the Social Security Act, simplifying payment arrangements for 14,000 veterans and their dependants. This will remove the need for the defence force income support allowance, simplifying the administrative processes.

This legislation will also see increased access to rent assistance for our most disabled veterans—rent assistance that they have not been able to access at all before. This will benefit approximately 6,900 veterans and their dependants. This will mean that disabled veterans will now have access to the same rent assistance as those who receive Centrelink benefits. This will increase rent assistance payable to veterans and enable some disabled veterans to receive rent assistance for the first time. In particular, this measurement will benefit totally and permanently incapacitated veterans who presently do not receive any rent assistance due to the amount of compensation that they receive.

The third schedule in this bill will remove references to the term 'disability pension' in the Veterans' Entitlements Act. In future, this payment will be referred to as the disability compensation payment. This change will clarify that these payments are compensation and will reduce the potential for the payment to be confused with Services Australia's disability support pensions.

The bill's fourth schedule will streamline indexation for disability pension compensation. Currently, the extreme disablement adjustment intermediate rate and special rate pensions, colloquially known as the TPI payment, are split into two components for indexation purposes. This legislation will remove this anomaly so that the whole amount is indexed as one. As an aside, this is but one of many anomalies that currently exist between the Veterans' Entitlements Act, the MRCA and the DRCA, but it is good to at least get this one resolved. Overall, this will simplify DVA legislation, policy and procedures. It will help avoid confusion for veterans about the purpose and structure of the extreme disablement adjustment intermediate and special rates of disability pensions.

The fifth schedule in the bill introduces a pilot program for earlier access to rehabilitation. This non-liability rehabilitation pilot will enable individuals to commence DVA funded rehabilitation before a liability decision has been made under the Military Rehabilitation and Compensation Act or the Safety, Rehabilitation and Compensation (Defence-related Claims) Act. Under these amendments, a two-year pilot will be established to bridge the gap and enable veterans to start their rehabilitation program sooner. This will improve and streamline the assistance that is provided to veterans whilst they are awaiting a liability decision, which can take some time.

However, the reality is, most veterans are looking for a TPI payment increase. The government has completely ignored concerns made by the Australian Federation of Totally and Permanently Incapacitated Ex Service Men and Women, as well as those of the Disabled Veterans of Australia Network, both of which have been raising the issue of the TPI payment level for many, many years—indeed, quite directly to me over my entire time in this parliament.

This led to the establishment of a Senate inquiry earlier this year. The Senate committee included both government and Labor senators as well as Independent Senator Jacqui Lambie, and its report was adopted unanimously. The committee found that submitters made a persuasive case for a fair and just structural increase in the above general rate component of the TPI payment to help restore the relative value of the payment and recognise and replace TPI veterans' loss of income. In fact, the committee noted correspondence from the Prime Minister, sent to the TPI Federation, where he said:

The TPI Federation makes a compelling case in relation to the relative value of the Above the General Rate (AGR) component of the SRDP [Special Rate of Disability Pension]. The fact that TPI veterans are not able to earn an income as a result of their service to our nation means that their loss of income during what would have been their working life should be appropriately recognised and replaced.

In addition, in a Senate estimates hearing on 26 October last year, the secretary of the Department of Veterans' Affairs conceded the Prime Minister's letter had raised expectations that the government would increase the TPI payment and the TPI Federation made a strong argument for an increase.

The committee recommended the government consider an increase to the TPI payment, with the government to consider the exact level of that increase. However, in response to this inquiry, the Morrison-Joyce government have merely 'noted' that recommendation. This is an absolute slap in the face to our 27,000 TPI veterans, veterans who are receiving less per annum than the minimum wage, veterans who quite rightly wonder why their service pension is reduced based on their partner's income, when, as recognised by a number of reviews, it is supposed to be an income replacement benefit for TPI veterans that is compensation consistent with insurance principles, not welfare. The means testing of this component of the payment against a spouse's income can be seen as a partial transfer of responsibility for paying such compensation from the Commonwealth to that veteran's partner or spouse. Before the 2019 election, the Prime Minister raised the hopes of veterans by commissioning a review into the TPI payment. It turns out that this was yet another announcement with no real delivery for our veterans.

Labor will not stand in the way of these measures, as we want to see some assistance, however modest, for these most deserving former Defence personnel. We know that the Department of Veterans' Affairs, though, is struggling to deal with a huge backlog of TPI pension claims, with 68 per cent of claims yet to be finalised as of April this year. This has now prompted a fresh review of the claims processing system. It's just not good enough. Our veterans have given so much for us. They deserve to be treated better than this. Veterans in my community are very fortunate to have the support of the RSL in Gosnells, the Kelmscott RSL and the Armadale RSL, and I thank them and other service providers in my community for their service to our veterans. But the department and this government should and must do better.

I commend the bill to the House.

Ms LANDRY (Capricornia—Assistant Minister for Children and Families and Assistant Minister for Regional Tourism) (17:58): I would like to recognise all members who contributed to the debate on this bill and acknowledge the continued tradition of bipartisan support for Australian veterans. This bill will implement the recommendations made by Mr David Tune in his Independent review into the TPI payment and the Productivity Commission's report, A better way to support veterans.

Mr Tune's review particularly highlighted the disadvantage faced by TPI veterans in private rental arrangements. Presently, the disability income rent test results in severely disabled veterans receiving less rent assistance than those with a lower level of disability. To address this, the Australian government is abolishing the disability income rent test from the Veterans' Entitlements Act 1986. Disabled veterans will now have access to the same rent assistance as those who receive it from Centrelink. This will increase rent assistance payable to veterans or enable some disabled veterans to receive rent assistance for the first time, benefiting approximately 6,900 veterans and their dependants.

By exempting disability payments from being considered as income under the Social Security Act 1991, this bill simplifies the payment arrangements of 14,000 veterans and dependants. As part of the Australian government's response to the Productivity Commission's report, this bill will also implement a two-year trial to encourage and enable access to non-liability rehabilitation for 100 veterans for each year of the pilot. This will provide veterans earlier access to treatment without the need to make a claim for compensation or await a determination of liability.

Improving support for veterans remains an important piece of national work. This bill will make tangible improvements to the lives of our most incapacitated veterans, who served our country with distinction and gave their all. The Australian government remains committed to helping ensure that they get the support they deserve. I commend this bill to the House.

Question agreed to.

Original question agreed to.

Bill read a second time.

Message from the Governor-General recommending appropriation announced.

Ms LANDRY (Capricornia—Assistant Minister for Children and Families and Assistant Minister for Regional Tourism) (18:01): by leave—I move:

That this bill be now read a third time.

Question agreed to.

Bill read a third time.

The DEPUTY SPEAKER ( Mr Zimmerman ) (18:02): I have received advice from the Chief Opposition Whip that he has nominated Ms Thwaites to be a member of the Joint Committee of Public Accounts and Audit in place of Mr Conroy.

Ms LANDRY (Capricornia—Assistant Minister for Children and Families and Assistant Minister for Regional Tourism) (18:02): by leave—I move:

That Mr Conroy be discharged from the Joint Committee of Public Accounts and Audit and that, in his place, Ms Thwaites be appointed a member of the committee.

Question agreed to.

Mr BURNS (Macnamara) (18:03): I begin this contribution on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 by saying that I know that many people on all sides of the House will have deep convictions and strongly held views about the specifics of this bill. This is my personal view that I express, and I obviously respect others who have a different view. In this bill I will be voting to support this legislation and this important reform.

Mitochondrial disease is a disease that is devastating for young children, devastating for parents and devastating for everyone who it touches. One in 200 people, or 120,000 Australians, carry the genetic change or specific genetic nature that potentially puts them at risk of developing mitochondrial disease or passing it on to their children. What this bill does is enable a regulatory arrangement so that IVF or an IVF-style treatment can be used to take the nuclear DNA from a patient's egg which contains the mitochondrial genetic aspect and then place it into a healthy donor egg. Every aspect of the DNA that makes us who we are, passed on by our mother, remains. This is a very, very specific change and very, very advanced technology that gives parents with this small genetic nuance a chance to have a healthy child. That's it. That's all it does. It gives them a chance to have a healthy child.

I had the privilege of working as an adviser in the Victorian government during the voluntary assisted dying debate in Victoria, when the Victorian government and the Victorian parliament legislated voluntary assisted dying. What that bill did was set up a very specific arduous process for someone to go through that awful choice. It was complex legislation. It was very narrow, and it set up a precedent for a difficult yet important framework to facilitate a momentous societal change, and I think that this bill is no different. This bill is specific. It is complex. It is also done in a way that doesn't limit this parliament but reaches for a high standard of legislation to make specific changes to improve the lives of Australians. In this place, if we are not reaching for difficult legislation and if we are not reaching to solve complex issues for Australians, then we are lowering ourselves. This is not an easy issue, but it is my view that bills like this are actually what make this place incredibly important. When we reach to solve problems such as mitochondrial disease, it shines and serves us all well as parliamentarians.

The other thing I'll say is that we, in this place, are truly blessed. We are blessed as people, as parents, as parliamentarians. Our lot in life, each of the 151 members of this place, is pretty darn good. We all have the full function available to us. We all can come into this place and stand up not only for ourselves but for the more than 100,000 people who elected us here. We've all been given a lot in life. That is something that I am extremely appreciative of and extremely grateful for. But the person whom this bill was named after, Maeve, wasn't. The families and the parents of people who carry the mitochondrial genetic nuance are given a much more difficult set of cards. To stand in this place and to give to those parents and to give to those families and, most importantly, to give to those future children that small improvement is a wonderfully generous gift that we could all give. I couldn't be prouder to stand in this place and say that I think we should all give it. I support this legislation.

Maeve is five. She has a difficult journey ahead of her. She struggles to walk. She struggles to talk. This disease is taking away the very things that we all take for granted. She has older sisters, and her parents have shown immense courage in using her story in order to ensure that others don't have to go through the incredibly difficult and challenging journey that Maeve has to.

So I say that I am proud to support this bill, that I am appreciative of all the things that I have been given, that I have a beautiful, healthy daughter who is able to live her life, and I hope she lives a long and prosperous and healthy and happy life. I hope that other Australian kids have the same opportunities that we all have and that we give this very, very small change to give them that chance.

Mr JOYCE (New England—Deputy Prime Minister and Minister for Infrastructure, Transport and Regional Development and Leader of the Nationals) (18:10): Thank you very much, Mr Deputy Speaker, for this opportunity to speak on something which I know is heartfelt and I know comes with many contentions. And I know that, most likely, I am on the losing side of the debate, but nonetheless the purpose of this chamber is for an examination and to announce a position and to give some cogent reason as to why you hold it.

Mitochondrial disease and the effects of it—no-one is suggesting for one second what dire circumstances they are, and no-one is suggesting for one second that, obviously, a life better lived, with a better quality of life, is something we search for. But things must be seen through the prism of consequences and balance, and, for my part, I won't be supporting the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I say that at the start, and I do it for a number of reasons. One is that mitochondrial donation has been legal in the United Kingdom for nearly five years, but there have been no reported live births in the UK, so it's not clear if this procedure is safe and practical. Also, with the changing of the human genome, it has consequences that we really don't understand, and we don't understand it to the extent that the legislation emphasises this danger by giving immunity from civil liability for the adverse effects, and this removal of liability from both the minister and senior public servants states, in its very nature, that there is an uncertainty about exactly where this leads. If, as I and others have said, it is too dangerous for the decision-makers then it's probably something that requires absolute caution as to whether you proceed down that path. I suppose one of the core issues, of course, is that mitochondrial donation involves the creation and then the destruction of human embryos. And that's a philosophical divide—I respect other people's opinions, but it's something that is quite strongly held.

So, to give reason to that, my explanation is: where, in a person's life, does another person have a greater right over it than themselves? And I cannot resolve myself to what that point is. If people pose the question, 'Is it the day before you were born?' then I think the vast majority of people say: 'No, that is not right. You can't terminate a life the day before it is born.' So we go on a journey and say, 'Maybe it's two days before,' and people say likewise. You say, 'Well, a week before.' Or is it at a point where it would be viable? Children, of course, can be born as early as 22 weeks and survive. How do you define the legal rights of one against the legal rights of the other? How do you get to a point where you say that, by reason of where the person is in their life, they have no rights, and then, at a certain point, a certain juncture, they do? I find trying to rationalise that point so often philosophically implausible, for my own part. I know other people have different views. Then there is the point of: Where do you go back to? How do you find that spot? What is the issue? Of course, people have varying views as to where the rights of the individual start and where they don't. If it's your capacity to look after yourself, then no child after they're born can look after themselves. No-one argues that they don't have rights. In fact, they probably aren't able to look after themselves until possibly as an early teenager, but there's not a parabola of rights where at certain ages through your life you have absolute rights and then they dwindle towards the end and they dwindle towards the start.

I have a view that it is a lineal position of rights and it's constant all the way through, and your capacity to comprehend your rights is merely that. If a person is asleep, they have no comprehension of their rights, but their rights nonetheless exist. If a person is knocked unconscious in an accident, they don't by doing so lose their rights. Have their rights in any way diminished? In fact, exceptional actions are taken to conserve the life and conserve their rights. So our actions in other parts of our life show, or other actions of any government show, that there is an absolute desire for the maintenance of life and the maintenance of the rights that exist for that life.

In the idea of liberty, of things that are attached to it, of liberalism, is a sense of attachment of a person's rights and protection of a person's rights and that a person has got to be allowed the capacity at some point to be master of their own ship, if so doing, and that what we should be doing is making sure that there are no impediments placed in the way of that person living the life that they wish to live. But, if a person's life is taken away from them, then of course they don't have any life at all.

How do we find the point where we believe that someone's rights come into existence? I can't find that. So you go back and back and back. I arrive at the point that when there is conception, when there is the capacity for the human egg—go right back: add ovum to the egg—that after that point, once there is fertilisation, there is a process in train where what you are talking about is the development of the human person, but I believe that at that point is the establishment of rights and they must be respected.

My main issue with this is the creation of that life for the known outcome, the deliberate outcome of knowing that there will be the destruction of that life. It wasn't an accident. It wasn't something that was not incurred; you actually create a life to destroy it, and I have a philosophical problem with that that goes beyond just a philosophical position, that actually divines how I am with this free vote—so we're talking about our positions—how I can't discern a latter stage where a person establishes a greater right, and neither has anybody ever been able to say to me they could clearly display or explain a latter stage where a person becomes a part of those rights.

In the complexion of this, of course, as always, is the issue of trying to deal with mitochondrial disease, with the mitochondrial defects, and, if that is not the solution, what is? We have an incredible capacity to develop the techniques into the future that are able to deal with this. We've had issues in the past, such as stem cell technology where it was implied that the only way was with embryonic stem cells, and it became apparent later that a vastly more apt process is stem cells that can be found in a person's own body, and this vastly reduces the capacity of rejection.

With our intrusion into the process of the human genome, we must acknowledge that down the track there will be genetic inheritance of the changes that we have made. They may be of no consequence. They may be completely free of any detriment to generations that come after us. But we just don't know. We haven't been able to work that issue out. We haven't gone far enough into this. We are talking not only about the rights of the embryo that was destroyed but also about the rights of people down the track, in future generations, as to what will affect them.

I think there's also another issue that is incredibly pertinent now, and we see that. A person has a right to understand what their genetics are and who their biological parents are. You can see it creates incredible hurt and frustration when people can't understand who they are. Everybody has an absolute desire to say, 'I know who supports me, who I was brought up with and who I call my mother and father,' whether they're biologically their mother or father or not, and they absolutely respect that. But the torment for many people is that they say, 'I don't know who my father is,' or, 'I don't know who my biological mother is; I don't know who that person is.' They live a life of searching for exactly what is the substance that makes them up and the essence of who they are.

We can see that portrayed in so many things, where so many people go to certain sites to find out what their heritage is, to search through it, to see what makes them up and to see what their genetics actually go back to, what is the source and what is the point. With this, we are creating a genomic line that will make that impossible. There will be a point where even genetic testing will be inconclusive, because you've got a combination of genetic material that comes from three people, not from two. So, for subsequent generations of these people, what makes them will be of a vastly different complexion and a vastly greater complexity than for people who are making the decision today.

So more needs to be done. I've tried to make sure that I didn't hide my philosophical view. It's clearly stated. I think that, on a lot of the issues which people worry about in this place, they say, 'I know you've got a view; you just don't say it.' Well, for the purpose of this, I have clearly stated my view. I note that there's been an agreement by the minister that sex selection is something that will not be supported, and I think that is a good thing, because inherently, once we do that, we start saying that one human being is of more value than another human being by reason of their gender. That, I think, is abhorrent to both sides of the chamber and is not accepted. That, in essence, also creates questions. People are thinking about this. It is not as simple and straightforward as it might first appear.

I thank the House for the opportunity to lay down a brief iteration of some of the concerns that I have and some form of reasoning as to why I hold them. For those reasons, I shan't be supporting this.

Mr KEOGH (Burt) (18:24): 'Mitochondrial disease' refers to a complex group of inherited conditions that can significantly lower an individual's health and life expectancy and that may be fatal. Mitochondrial disease is caused by mutations in the mitochondrial DNA or nuclear DNA of an individual, which can impact the ability of that individual's mitochondria to function properly. The disease varies in presentation and severity, but common symptoms include developmental delays, seizures, weakness and fatigue, muscle pain, vision and hearing loss, multiple organ failure and heart problems, leading to morbidity and, in severe cases, premature death.

The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 aims to enable procedures intended to prevent the inheritance of mutated mitochondrial DNA, which is inherited exclusively through the mother. Mitochondrial disease is an umbrella term including a wide range of illnesses, with the severity of the disease dependent on how much of the DNA contains the mutation. The risk of developing serious illness due to mitochondrial disease is considered to be between one in 5,000 and one in 10,000. However, it is estimated that around one in 200 Australians is predisposed to mitochondrial disease, and approximately 56 children are born each year with a severe form of the disease. There are no typical symptoms, and, historically, diagnosing mitochondrial diseases has been challenging. Critically, a mother can carry mitochondrial disease unknowingly. There is no cure for mitochondrial disease, just the treatment of symptoms. In its most severe form, the disease can be debilitating, and children can die early in life.

This bill contains provisions that only women with a high level of mutations would be eligible to use mitochondrial donation, which this bill proposes to enable, in an effort to stop the mother from passing on the mutated genes to her offspring. This technique will not remove mitochondrial disease from the community. Children with mitochondrial disease would still be born. Mitochondrial donation will not impact asymptomatic female carriers, because they wouldn't realise they're at risk. Nuclear DNA mutations, which make up approximately 50 per cent of mitochondrial disease, are caused by this. This is not impacted by this legislation, nor would it impact on new mutations in the child born.

Research for treatments needs to remain the focus. In the view of many, the bill before us today is ill advised and certainly premature. It would allow deliberate heritable human germline gene manipulation and transfer. The risks for children born using these techniques are not yet fully understood, and the available scientific evidence to support this procedure is limited. The United Nations Convention on the Rights of the Child exhorts signatories, including Australia, to act on the principle that a child, by reason of its physical and mental immaturity, needs special safeguards and care, including appropriate legal protection before as well as after birth. While, of course, no child ever consents to being born, and all the joy and agony that that can come with, the implementation of this bill would burden future generations with unpredictable impacts on human gene pool integrity and pass without Australians being informed or giving consent to these changes.

It ignores experts who say clinical use of mitochondrial DNA transfer is too risky to yet be allowed in humans. While it would enable mitochondrial DNA disease afflicted parents to have children genetically related to them, the children would also be related to a third party. There would be three genetic parents for such a child. This procedure is a high-risk experiment instead of safer methods for such parents to have mitochondrial DNA disease-free children, though admittedly not ones related to both parents. Moving down this path would also create a climate of acceptance for other uses of the techniques—potentially, gender selection, genetic enhancement or to renovate older human eggs that are unfit for purpose. Such procedures should also remain not permitted. I encourage all members of parliament and those interested in these areas to watch the 1997 movie Gattaca. It is an accessible and thought-provoking way to understand and consider some of these issues. It will certainly make one pause. This bill will also enable a process that requires the creation of an embryo solely for the intended purpose of destroying it.

In 2019-20, the National Health and Medical Research Council undertook a series of community consultative activities on this matter. There was also a Senate inquiry. Through those consultative processes, there was significant community support for legalising mitochondrial donation for use in Australia. However, these consultations also identified that the majority also recommended that a cautious and nationally regulated approach with appropriate safeguards and ongoing monitoring would be essential. A number of ethical issues associated with mitochondrial donation have also been identified, with some members of the community concerned that the technology would result in three-parent children or a form of genetic modification. Concerns regarding the rights of the child, privacy of parents and children and ensuring informed consent and donor rights and responsibilities were also identified. Ultimately, there were many unknowns, given the relative newness of the science, including in relation to the safety and efficacy of the techniques as well as the potential for unintended consequences in the longer term that would benefit from further research.

Protecting the human rights of any child who may be born using the new experimental mitochondrial DNA techniques should be prioritised, especially to meet our responsibilities under the Convention on the Rights of the Child. As it stands, it appears a child born in the clinical experiments and any descendants would have no rights to redress or compensation for adverse health or other impacts resulting from the use of the high-risk, novel techniques and procedures that this bill proposes to license.

The bill greatly reduces the genetically engineered mitochondrial DNA child's rights when it grants immunity from civil liability or accountability to Commonwealth government officials, government appointees or other categories of protected person for a broad range of protected actions. So, should a child's right have priority over the aspirations of its parents with mitochondrial DNA disease to try for their own genetically related child through this clinical process? The child, created using its mother's nuclear DNA, would still have a high risk of suffering the same debilitating mitochondrial disease as she does. Such prospective parents already have several well-established, much safer, lower-risk options available to create a mitochondrial-DNA-disease-free family without it needlessly and unacceptably infringing the rights of the child or their descendants.

The law already permits IVF, screening of donated sperm and egg, adoption and fostering, which more assuredly protect the rights of a child to good health and freedom from its parents' disease. In the United States, mitochondrial donation is banned due to the impact it may have on germline, and it needs more research. The view there is that it is currently too unsafe for use in humans. While in the UK such procedures have been permitted since 2017, there is no confirmed live birth using this method and it is not permitted in any other country. This is all with good reason.

I understand that, as a father of two so far seemingly healthy children, this is all relatively easy for me to say. My heart swells for the parents who, knowing their biological children would also have this debilitating disease, are confronted with such very difficult choices. In no way do I dismiss their passionate, good-faith advocacy and I have nothing but compassion for their situation. It may still be that further research allows us to revisit this issue in the future with more very necessary information. There must be more conclusive research data on the safety, efficacy, equity and ethics of this gene manipulation before I am able to vote for this in good conscience. It's simply too risky. One should not be playing God. I cannot support the bill.

Mr McCORMACK (Riverina) (18:33): I appreciate the sensitive and respectful way that members are approaching this issue and talking about this issue. I get that it is a conscience vote and these sorts of ethical debates are always very hard, because you have to grapple with your own conscience. You have to, of course, take the views of your electorate. Many people are influenced largely by their upbringing, their church, what their parents told them and what they have experienced in their own lives. I am no different to anybody in this place in that regard.

This is a very difficult topic. I've had correspondence from many people within my electorate. I've listened to their views. I've respected their opinions. I've talked with many constituents. I've had letters from religious leaders within the Riverina. I appreciate that my bishop, Mark Edwards—I'm a Catholic—who is new to the diocese and for whom I've got the highest regard, has quite correctly pointed out to me that he heads a very conservative diocese. He says his heart and, he assured me, the hearts of everyone go out to families who have children with mitochondrial disease and to those with the understandable desire that their future children not suffer these burdens. He pointed out to me—and no-one would have any countenance to this—that we all want to spare children illness and suffering. I understand that, and I respect that.

When I entered parliament in 2010, the erstwhile senator John Williams said to me once, as we were having a quiet discussion about life, that no-one should ever complain about getting old because, as he quite correctly pointed out, some don't get the chance. Some don't get the opportunity to grow old; they die young. Whilst it's far removed from this debate, a 20-month-old child was, sadly, taken today when they were crushed by a truck in Temora Shire. When I read the report, my stomach churned—and I can hear the member for Dawson grieving behind me, just from hearing me say that. It is heart-wrenching. The member for Dawson and I have had a few disagreements lately, but I respect his advocacy. I know he is the father of a very young daughter. My children aren't that young these days, I'm happy to say.

The previous speaker said that he hopes his children grow up healthy and happy, and I think that's all parents can ever hope for. Nobody starts out as a parent wanting anything other than that. Sure, as life goes on they all want them to be astronauts or prime ministers or the best they can be. But at the outset they just want their kids to be happy and healthy, and, quite frankly, if they're happy and healthy then being astronauts or prime ministers or anything else doesn't really matter—as long as they be their best selves.

To former Senator Williams's point that not everybody gets the chance to live to an old age: I have grappled with my conscience and I have tried to read as much as I can about this debate before us. These views have been expressed to me by people within my electorate. My office staff are very, very good when I'm out and about in my very large electorate. When I was the Deputy Prime Minister they took a number of constituents' interviews, and I thank them for that. They listened empathetically and with a heartfelt manner, as they always do. My staff are so exceptional.

Two people came to my Wagga Wagga office and to my Parkes office with their own stories about why they felt this legislation was so important. This afternoon I rang one of those constituents. She was on her way to delivering some goodies as a part of a fundraiser for a local high school. That's the sort of person she is. This is the sort of person that I know we've all got in our electorates. Her name is Nicole Baldry. She's a young mother. She's a farmer with her husband, Carl, near Bethungra. Nicole and Carl have four beautiful children, but one of them is not with them anymore. They have Angus, who is 12; George, who is eight; and Rupert, who is almost two. But they don't have Henry. Henry died on 7 April 2016. He was a beautiful child in every way. I shared with Nicole my own mother's grief that she had for a baby lost, stillborn. I am looking forward to meeting Senator Kristina Keneally on Thursday about her particular advocacy in that regard. My mother grieved for her whole life at losing a baby who she carried to full term and lost on the day he was born. Whilst we never got to know that little boy, my mother never stopped mourning him.

I know that Nicole and Carl will never stop mourning baby Henry, who died at nine days old—nine days young. She said he was perfect for the first 10 hours, but he never fed and never opened his eyes. She wrapped him up and laid him in a little crib, and he made a noise that she felt was odd. She had had two children, and mothers know instinctively when something is not right, much more so than, perhaps, fathers. I am a father, and I admit that mothers know; they just do. She said she called the nurse, and the nurse came straight away for a welfare check on her as a young mum having just had a newborn. The nurse ran down the corridor and got some other help to see what was wrong with little Henry, and Henry was not right. This was at Wagga Wagga Base Hospital. Henry was transferred to Sydney, and later on he died in Westmead Children's Hospital.

It took, almost unbelievably, a full year—just think about that; 12 long months—for the biopsies to determine that little Henry died from mitochondrial disease. The grieving of Nicole and Carl didn't stop then; at least they knew what Henry had passed away from. Nicole is a very big advocate for this legislation to be passed because she doesn't want to see other families suffer the way she has, the way her family has. She says that whilst she doesn't actually have it, there is a fifty-fifty chance she would carry it on to any future babies; both she and her husband carry the genes to pass it on.

When couples fall in love—most of us can probably remember when we fell in love with Ms Right or Mr Right—they might get engaged and get married, and they might just decide to have children together. We live in a modern world, and no-one holds anything against people. What people want is to provide a loving, caring, nurturing home. When they have kids, they just want them to be happy and healthy, but when you fall in love, you don't know the person with whom you fall in love, be it a male-female, female-female or male-male relationship. You don't know whether the genes that you both possess are going to cause hardship and heartache and debilitating illnesses and diseases for the children, the offspring, that you may produce in the future. This legislation can provide you with at least the ability to predetermine that your children will be happy and healthy. Going back to what former senator Williams said, that is all that you want for your kids—for them to grow up to an older age.

I know it's difficult legislation. I appreciate that it's a conscience vote and there will be members who will vote no all in good conscience. There will be members who vote yes all in good conscience. No-one should think any less of anybody for whichever way they do decide to vote. Indeed, people out in our electorates should not think anything less of how anyone decides to vote, just like with the Voluntary Assisted Dying Bill in the New South Wales parliament, which has been taking up so many headlines in so many newspapers in recent times. These are difficult debates, but having a vote on these is what I think makes our society better and makes our society stronger.

Far be it from me to come into this place, having served 11 years here, and not vote the way that I think some families would like me to vote, because I don't want to have to look them in the eye down the track years from now and for them to have a child who is profoundly ill because of a mitochondrial condition that could have been avoided had perhaps I voted a different way. I don't want to, in one sense, play God in that respect. I appreciate religious leaders will say, 'You are playing God anyway.' I'd like to think I am faith driven. I do pray—I pray for a better society every day in many ways.

But, having spoken to Nicole Baldry today, she said that she could see why people would say that mitochondrial intervention would provide blue-eyed, blond-haired, genetically perfect children. That's not what this is about. It's about making sure that, if people are predisposed to or carrying mitochondrial genes, they can avoid passing it on to children who would then potentially suffer a life of heartache, pain, disfigurement, and going to school and suffering all the torment and bullying that, sadly, children who are born different—if I can put it that way—endure, even today. Nicole said, and it was quite profound, 'I would do anything to stop my child living through that.' I know that what Nicole Baldry said would be the view of so many parents.

Nicole told me she met a 74-year-old man who suffered from conditions of mitochondrial symptoms. He expressed to her how difficult his life had been, how hard his entire existence had been, because of what he had endured. I have to say that her conversation, her arguments and her advocacy were very compelling. For that reason—not just Nicole's viewpoint but the viewpoints of many others, whilst fully respecting the viewpoints of those opposed—I will be supporting this legislation. In good conscience and for the fact that I want kids to have their best start, their best lives, I will be supporting this legislation, as difficult as it is.

Mr KHALIL (Wills) (18:48): It's not often in this place we are given an opportunity to vote according to our conscience. When these times do come around, it is a moment of great import for this parliament because, while we disagree much of the time in this place, what makes this type of vote different is that our debate will be not just along party policy lines but also based on each member's philosophy, values and conscience.

The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 amends existing acts to make mitochondrial donation legal in Australia. We've heard that mitochondrial donation is a procedure that allows women to have a biological child in a way that minimises the risk of transmission of mitochondrial disease. We've heard that this is a disease for which there is no cure, that can leave young children with multiple organ failure or heart problems, can cause seizures and can be fatal. Mito disease is a genetic, often inherited, disorder that can be passed on from the mother and, in some cases, develop at conception. Each year, here in Australia, around 56 children are born with a severe form of the disease. That's one child a week. The tragic projection for these children is that many will die within the first five years of their lives.

One of these children, and the namesake of this bill, Maeve Hood, has a severe type of mitochondrial disease that was diagnosed at 18 months. Thankfully Maeve is one of the more fortunate children and is still here with us. She's five years old and has just finished her first year of kindergarten. But her family, of course, lives with the uncertainty that each day brings. As a father of two young children, and I know many of the members here would have the same feeling, I can only imagine the heartache and anguish of parents of children who suffer from such a devastating disease. There are significant mental health costs associated with watching a family member's child or friend die from mito.

Also, the financial costs associated with mitochondrial disease are high. The Mito Foundation estimates lifetime healthcare costs for a child born with a rare disease, such as mito, is around $2.5 million in the UK and about $5 million in the US. Aside from these sorts of costs which are incurred, there are social services, income disability support and reduction in economic participation from affected individuals, parents and other carers. In his submission to the Senate inquiry, Professor Thorburn, a co-Group Leader of Brain & Mitochondrial Research at the Murdoch Children's Research Institute, estimated that mitochondrial donation could provide between $33 and $66 million a year in healthcare savings based on a conservative estimate of five to 10 children per year born without mito.

The purpose of Maeve's Law is to legalise mitochondrial donation for particular research, training and reproductive purposes. Mitochondrial donation is an IVF based technique known as assisted reproductive technology, or ART. There are several mitochondrial donation techniques, including maternal spindle transfer, MST, and pronuclear transfer, PNT. Both of these techniques are currently legal in the United Kingdom. Basically, depending on these techniques, nuclear DNA is removed from the affected mother's egg at different stages. With MST it's prefertilisation and with PNT it's after fertilisation of the egg. The nuclear DNA is removed from the affected mother's egg, which contains the mutated mitochondria, and the nuclear DNA is inserted into a healthy donor egg which has had its nuclear DNA removed but retains its mitochondrial DNA, which is the donation part. For the record, this is only 0.1 per cent of the entire human DNA. This is not a treatment for people who already suffer from mito, of course, but the procedure aims to allow a mother who carries mitochondrial DNA mutations to have a genetically related child who has a reduced risk of mitochondrial disease occurring. The Mito Foundation estimates that in Australia between 50 and 60 children each year could be born free from mito if mitochondrial donation was legalised.

We know that there are a number of medical and ethical concerns that have been raised with respect to the legalisation of this procedure in Australia. I recognise these concerns and have engaged and consulted with stakeholders over the past 12 months. In 2018 the Senate Community Affairs References Committee undertook an inquiry, which I've referred to, into the science of mitochondrial donation and examined the impacts of the disease and the legal and ethical considerations associated with a mitochondrial donation. One of the issues raised is the status of the embryo, and many stakeholders raised ethical concerns that the creation of an embryo for the purpose of destroying it violates the dignity that is owed to the embryo. I would note that this objection also applies broadly to the ethical use of embryos. It is not limited to mitochondrial donation but in fact applies to all forms of ART, including IVF, which, as we know, has helped families have children for some 37 years.

It's important to note that there are different religious views and interpretations about the moral status of the embryo. Not all faiths are the same. Even within the Christian faith, there are big differences between the Catholic faith and the Orthodox faith, for example, about at which point in time the embryo is considered to have that moral status. This is why some of these faiths have different views around contraception and IVF and other types of technologies.

The other big issue is the so-called third-parent issue, which we've heard some people raise. As part of the inquiry, a question was raised as to whether mitochondrial donation is different or distinct from germline genetic modification. 'Germ line' refers to the cells through which DNA is inherited by offspring. In humans this includes reproductive cells. In most jurisdictions, germ-line modification is illegal as it allows for the alteration of certain characteristics of a child. The inquiry by the Senate Community Affairs Legislation Committee received a number of submissions on this issue. The committee's report concluded that mitochondrial donation should not be considered a form of germ-line genetic modification, even though it results in changes to mitochondrial DNA that can affect future generations—again, noting that this relates to only 0.1 per cent of the entire human DNA—because mitochondrial DNA has no effect on the traits or characteristics of a person such as personality, appearance, intelligence and so on. The committee accepts that there is a substantive difference between mitochondrial DNA and nuclear DNA. It's the latter that changes the characteristics of a person. The genetic contribution of the so-called third parent in this process is the donation through the process of MST or PNT, where the mitochondrial DNA is donated, and it is vastly smaller than the contribution of the intending parents.

In the UK, where mitochondrial donation has already been legalised, the donor is considered to be the equivalent of an organ donor. This is an important point because the UK took the view that MST and PNT resulted in some germ-line modification, because the effects are passed on. However, it was decided that mitochondrial donation techniques do not constitute genetic modification, since this was defined as requiring germ-line modification of the nuclear DNA—the majority part of what makes a person a human being. That is what can be passed on to future generations. There were similar fears raised about heart and bone marrow transplants when those technologies were first proposed and utilised.

There are of course issues in relation to carryover mutated mito-DNA and haplogroup matching—very scientific and very technical—which I have spent a fair bit of time going through, as I think all members have, to try and better understand the science. We know that mitochondrial DNA is transferred maternally through the biological mother and that, therefore, the mitochondrial DNA changes can transfer through the female child. Hence there has been a call in some submissions and in other jurisdictions for only male embryos to be used so as to limit that transfer. There are also issues around haplogroup matching and whether that should be a voluntary matching by the parents with the donor and the mother's eggs. These are issues that I have raised, discussed and consulted on with stakeholders who are medical professionals, scientists, religious leaders and other stakeholders to satisfy myself as a lawmaker that these issues are substantively and ethically dealt with in this legislation, particularly through the very careful and staged approach to the implementation of this technology in our jurisdiction.

Another issue that has been raised is whether donors should be anonymous or whether the child has a right to know the identity of the donor. This question needs to be considered from the perspective of the donor and the perspective of a child who may be born of this technique. In the United Kingdom they allow a child to discover only non-identifying information about the donor from the age of 16, making the donation effectively anonymous. On the other side of the debate, under UK law a donor is entitled to know how many children have been born from their donated material, the sex of those children and the years in which they were born. The rationale in the UK for making the donation anonymous is that mitochondrial donation is more akin to organ or tissue donation than to reproductive donation, and the preference for anonymity reflects that fact.

On the other side of the debate too, women who choose to donate their eggs for mito-donation may be making a small contribution to this process, but it is fundamental to the child born as a result. To understate this contribution overlooks the significance of the physical donation and the difference it will make to the child's life. There are many other significant factors to consider, including the child's right to know their biological heritage and the shift in Australian attitudes towards making known information about a person's biological heritage in both the adoption space and other forms of IVF. These factors led the committee to find that children who are born from mitochondrial techniques should be entitled to know the donor if they want to but that it should be conceptualised as being similar to an organ donation, because they are donating non-nuclear genetic material. As such, the bill sets out the Mitochondrial Donation Donor Register, which will be a safe and secure record for storing details about those born as a result of mito donation. It will also allow the child, once 18, to find out the identity of their donor. Other groups have identified concern for anticipated consent, which is the issue about whether the child would consent to the procedure, something that we can never know for sure, obviously, but it's important to note in this debate.

I do want to note for the record that I support the amendments to this bill, which address some of those ethical and medical concerns raised through the committee inquiry process, particularly clarifying that donated mitochondria must be sourced from human eggs; expanding and clarifying the circumstances in which 'proper consent' is needed before mitochondrial donation techniques are used; clarifying the circumstances in which the Embryo Research Licensing Committee is able to seek expert advice when performing its statutory functions; enhancing mitochondrial donor privacy through provisions relating to the register; and further enhancing privacy by ensuring that the ERLC statutory reports to parliament cannot disclose identifiable personal information. These amendments reflect the recommendations of the Senate Standing Committee for the Scrutiny of Bills. No doubt, the science around this is immensely complex. The United Kingdom conducted four scientific reviews that concluded the benefits outweighed the potential risk, and these reviews are utilised as the basis for many conclusions that we have drawn here in Australia.

It is also important to note that mito donation will be introduced in a very staged and closely monitored way as part of this legislation, the first stage being donation legalised for certain research and training purposes, including for the purpose of undertaking a clinical trial of the use of mitochondrial donation techniques, whether it be MST or PNT or some of the other, more experimental techniques as part of the human ART. The second stage will commence when regulations are made prescribing mito donation techniques for use in clinical practice. These arrangements have been based on the approach the UK has taken in legalising mito donation.

I strongly support this staged introduction of mitochondrial donation and the very close monitoring that is part of it. This law is not about allowing Gattaca style designer babies, free of all genetic alteration; it's not about that, as the previous speaker noted. It provides strict legislative oversight, allowing one or two medical facilities to start trials to find out which methods work best. The reality is it will likely be a decade or more before any treatment will become available outside a clinical trial setting. But it provides families with hope that this terrible disease will not be passed on through future generations.

I would like to recognise the work of Maeve's parents, Joel and Sarah Hood, the many tireless advocates, and the member for Macarthur and the member for Higgins for their advocacy on this law. The bill is in Maeve's honour, but, if passed, will ensure that other children and parents don't have to suffer the consequences of this horrible disease, like Maeve and so many other children and parents have had to deal with—children that otherwise would have lived a rich, full life past the age of five. I support this bill and the amendments.

Dr WEBSTER (Mallee) (19:03): I am glad to rise today to speak in favour of this important bill. The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 offers a chance to prevent an insidious genetic disease inflicting further pain and misery on future generations. I understand this bill is controversial, and I would like to outline why I am in favour of it.

Mitochondria are tiny structures within our cells which produce 90 per cent of our body's energy needs. They are passed from mother to child through the mother's egg cells. These tiny but vital structures within our cells can be afflicted by disease. These diseases are genetic, caused by mutations in the mitochondrial DNA. The disease varies in presentation and severity, but common symptoms include developmental delays, seizures, weakness and fatigue, muscle pain, vision and hearing loss, multiple organ failure and heart problems, leading to morbidity and, in severe cases, premature death. Around one in 200 Australians are estimated to be predisposed to mitochondrial disease, and approximately 56 children are born each year with a severe form of the disease. The prognosis for these children is that most will die within their first five years. Currently, there is no known cure for mitochondrial disease, and treatment options are mostly limited to management of symptoms.

This terrible disease can be prevented. 'Mitochondrial donation' refers to an IVF process that allows a woman whose own mitochondria may predispose her children to genetic disease to have a biological child that does not inherit that predisposition. Mitochondrial donation allows the mother's mitochondria, which may pass on the genetic disease, to be replaced with a donor's in the IVF process. The egg with the donor's mitochondria and the mother's nucleus DNA can then be fertilised by the father's sperm.

It is important to address some of the criticism of this bill. This process does not create designer babies. It is a targeted process, only substituting a donor's healthy mitochondria for the mother's mitochondria. Mitochondrial DNA has no bearing on eye colour, appearance or any other factor to do with a person's personality. That is all in the nucleus DNA, which is unchanged in the process. For this reason, it does not create three-parent babies. The child will have only two biological parents—its father and mother—and will get its nuclear DNA and all its inherent characteristics from its biological parents. The mitochondrial DNA will have no bearing on this. Mitochondrial donation is not cloning. Children born through this process will inherit their nucleus DNA and their genetic diversity from their biological parents in the same way as any child naturally born.

My decision to be in favour of this bill was assisted by the experience in the United Kingdom. In 2015, the United Kingdom legalised mitochondrial donation after extensive public consultation and scientific reviews. They now have a licensed clinic which operates in a very stringent regulatory framework. The bill before us today is, in many ways, inspired by what is best practice determined through the UK experience.

This bill seeks to amend a number of Commonwealth laws to permit mitochondrial donation for research and human reproductive purposes. The bill does this in a highly regulated and controlled manner, which is appropriate for a new area of research in a delicate area. The bill will be implemented in stages. The first stage will see the legalisation of mitochondrial donation for certain research and training purposes. This will allow an assessment of feasibility and safety to be made before any broader rollout. This will also help build expertise within Australia and will allow clinical trials, which will have the added benefit of allowing some affected families to have access to the technology sooner in a regulated clinical setting.

The bill will allow for five different mitochondrial donation licences to be granted for areas including clinical trials, research and practice. The Embryo Research Licensing Committee, the ERLC, of the NHMRC will see its regulatory remit expanded to oversee these licences and their requirements, such as reporting and monitoring. Certain licences will have specific conditions relating to the approval processes for individuals seeking access to mitochondrial donation. These licences will also specify only certain mitochondrial donation techniques. Initially, the bill permits only the techniques known as maternal spindle transfer, or MST, and pronuclear transfer, or PNT, for use under a mitochondrial donation clinical trial research and training licence or clinical trial licence. This is also the case in the United Kingdom, and these two techniques have had extensive scientific research and review. It is important to highlight that some of these mitochondria donation processes involve fertilised eggs that are not used. However, these are dealt with very early in the process, before the number of cell divisions required to form an embryo.

The second stage will only occur after years of demonstrated success in clinical trials. Depending on the results of the trials, further regulations and discussions of legalisation with states and territories could see accredited assisted reproductive technology centres across Australia offer mitochondrial donation.

The bill largely aligns with current regulations on assisted reproductive treatment, or ART. Mitochondrial egg donors are not considered legal parents, and eggs can only be donated voluntarily by family, friends or others who agree to donate or have eggs in excess of their own needs.

I note the extensive public consultation that has occurred with this bill. In 2018, the Senate Community Affairs References Committee conducted an inquiry into the science of mitochondrial donation and related matters. The final report made four recommendations for further community consultation and scientific review to be undertaken, and for those findings to inform options for legislative change. The Senate Community Affairs Legislation Committee considered the bill, with public submissions and hearings, in its August 2021 report summarising its submissions. The NHMRC also dealt with this topic at length in 2019, with public consultations, webinars and a citizens panel. This year in February 2021 the Department of Health released a public discussion paper.

The ethical questions people may have regarding the bill are well documented in these public consultations, and I thank everyone who raised their concerns to the various committees and panels. I think what we have now is a measured and targeted bill that addresses many of the concerns of adopting this new technology while providing an option for parents who, through no fault of their own, may have predisposition to this awful genetic disease: an option to have their own genetic children who have healthy mitochondria. It is easy to get caught up in the detailed regulations and medical and legal terminology with this bill, but the fact remains that this bill is about doing the greatest good for the greatest number of people. I have had many in my electorate talk to me about this issue. They do not want to see their children or any child suffer from a preventable disease, and neither do I.

Debate adjourned.

Mr ROB MITCHELL (McEwen—Second Deputy Speaker) (19:14): I rise to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. Genetic illness is an issue that's always been close to my heart. Throughout my parliamentary career I have constantly sought to advocate the wellbeing of families and individuals that suffer with such diseases. My work with Rare Voices Australia, the national peak body advocating for Australians living with rare diseases, and my own experience with my own family have informed my views on these very important issues.

It's often thought that only those who have directly experienced it can understand the turmoil that accompanies the diagnosis of a rare disease or illness for both the individual diagnosed and their family. In addition to the physical degradation that is the hallmark of such diseases, many of which are terminal, the emotional distress which accompanies such diseases is immense. Genetic and mitochondrial diseases are often rare and, as such, often lack adequate research and support services, compounding the strain on those suffering from them. Mitochondrial and other genetic disease, and both its physical and emotional impacts, is something I do not wish upon anyone.

This law will allow so many families who wish to have biological children the opportunity to do so. I think about Bethany Hodge and her husband, James, who live in my electorate. They hope to have children, but Beth's sister suffers from a mitochondrial disease known as MERRF syndrome, which significantly impacts her quality of life. Beth has discovered she is a carrier of this mitochondrial disease. Seeing the way her sister has struggled with the disease, Beth and her husband, James, do not want to expose their children and future generations to the possibility of experiencing it. The passing of this bill would allow Beth and James to have their own biological children without the fear of passing on such a severe disease. Beth told me that the passing of Maeve's Law will completely change the future for her family. She said she can't put into words how desperately her family want the chance to have their own healthy child. There are thousands of families like Beth's and James's across the country, and it's my belief that we owe them all our due consideration of this bill.

Through my own family's history with Marfan syndrome, which resulted in the death of my younger brother and cousins, it's my belief that science offers us an opportunity to prevent suffering. I think that we should all seize that opportunity to have that developed. This world is defined by countless challenges which, every day, we struggle to resolve. For the domestic and global burdens of conflict, poverty and famine, and, indeed, the illnesses that are complex issues, solutions often remain outside our grasp. The suffering that accompanies mitochondrial disease is a hardship which we have the power to avert. Through careful research we have discovered a way to prevent suffering before it even begins, and I proudly rise in this chamber to advocate that we do just that.

The risk of developing serious illness due to mitochondrial disease is small, but it is immensely significant for those who ultimately experience it. Around one in 200 Australians are estimated to be predisposed to mitochondrial disease, and approximately 56 children are born each year with a severe form of the disease. Most of these children are expected to have a life of around only five years. There is no known cure for mitochondrial disease and the treatment options are mostly limited to management of symptoms.

Mitochondrial donation is an assisted reproductive technology that, when combined with IVF, has the potential to allow women whose mitochondria would predispose their potential children to have a biological child that does not inherit that risk. The bill before the House introduces safeguards to ensure that the techniques are safe, effective and properly regulated. It also protects the privacy of the persons who make use of mitochondrial donation techniques.

Under the bill, mitochondrial donation will be introduced in a staged and closely monitored way. In the first stage, mitochondrial donation will be legalised for certain research and training purposes, including the purpose of undertaking a clinical trial of the use of mitochondrial donation techniques as part of human assisted reproductive technology. The aim of this approach is to build an Australian evidence base in relation to the safety and efficacy of mitochondrial donation techniques and associated issues such as feasibility, service delivery and costed impacts prior to a decision being made on introducing the use of techniques more broadly into the clinical practice.

I think that this staged approach to the use of mitochondrial donation is supported by rare illness advocacy groups such as Rare Voices Australia, with whom I have consulted. I know the work that they do for people who have absolute hardship in dealing with their own issues. It's so important that people like those at Rare Voices Australia are heard and supported, and I think the government should do all they can to make sure that there is proper funding and support available to families dealing with rare illnesses.

The use of specified mitochondrial donation techniques under this first stage would be subject to very strict licensing conditions. Once the clinical trial has demonstrated success over several years and the results have been evaluated by the experts, there will be an option to move to the second stage of this staged implementation, which would allow for accredited assisted reproduction technology centres across Australia to offer mitochondrial donation in a clinical practice as part of assisted reproductive therapy. Before such techniques could be used in a particular state or territory, the state or territory would need to enact its own laws authorising the use of the technique. The state or territory would, in doing so, be able to further regulate the use of the technique as part of its regulation of assisted reproductive technologies in its jurisdiction.

I know there are some groups with concerns about this new technology, and I honestly believe that many of those concerns have been addressed in wide community consultation. I am very conscious, though, that the benefits of greatly reducing the impact of mitochondrial disease on children's families and future generations is fundamental to a small but significant number of families across the nation, and the benefits that we seek to see far outweigh the risks of introducing mitochondrial donation overall. I am proud to add my voice to support these families—families like my own and families that live in my electorate—and so that Bethany Hodge and her husband, James, can have their child and know that that child is going to have a wonderful life and an opportunity.

Despite there being people who have different views, let's just have a look at who this will impact. When we look at who it will impact, I think we as leaders of this nation have an obligation to support science, support the opportunity and particularly support those families who this directly impacts. With that, I wish this bill speedy passage.

Mrs WICKS (Robertson) (19:23): I rise to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. This bill will allow women whose children would otherwise be susceptible to life-threatening mitochondrial disease to avoid their children inheriting it. This is a disease that significantly reduces life expectancy and quality of life, and it's very difficult to diagnose. There are currently no known cures for mitochondrial disease, with treatment options generally aimed at managing symptoms. The risk of developing serious illness is around one in 5,000 to one in 10,000, but approximately one in 200 Australians may be predisposed to mitochondrial disease.

Mitochondrial donation is an assisted reproductive technology that, when combined with in-vitro fertilisation, or IVF, as it is so well known, has the potential to allow women whose mitochondria would predispose their potential children to this disease to have a healthy biological child. The process creates an embryo which includes nuclear DNA from the man and the woman seeking to have the child as well as mitochondrial DNA from a donor egg, minimising the risk of transmission.

This bill establishes a national regulatory framework which allows different types of mitochondrial donation techniques for clinical use under a clinical trial licence for human reproduction. One of these is maternal spindle transfer. This involves removing the maternal spindle of both the prospective mother's egg and the mitochondrial donor's egg prior to fertilisation. The maternal spindle which has been removed from the mother's egg is then placed into the mitochondrial donor egg, which is then fertilised to form a zygote and then an embryo. The egg cell of the prospective mother, which no longer contains any nuclear DNA, is discarded.

Another technique outlined in this bill is pronuclear transfer. While I acknowledge that the science involved is very complex, I do have some personal concerns with this method, arising from my own personal faith. Pronuclear transfer requires fertilisation of both the prospective mother's egg and the mitochondrial donor's egg, using the father's sperm to produce two zygotes. It's at this stage that the pronuclear transfer occurs. The two pronuclei are removed from the zygote produced from the egg cell of the prospective mother and placed into the zygote which is produced from the egg cell of the mitochondrial donor. Following this, the zygote which is produced from the egg cell of the prospective mother, and which no longer contains any nuclear DNA, is discarded.

My concerns with this technique relate specifically to the creation of a zygote with the specific intention that it will later be destroyed. Whilst I acknowledge that there are a range of views in this place, and indeed around the nation, as to when human life begins, I personally cannot support this method. While I acknowledge that there are different definitions of when human life begins—whether that be a medical definition, a religious definition of many different kinds, a legal definition or otherwise—for me and for others who hold religious beliefs, this view of when life begins is deeply rooted in our faith. I acknowledge that, although I hold a Christian faith, this is something that is very personal in terms of when one might believe that life begins.

It's something that I had to wrestle with when, some 13 years ago, I underwent IVF myself in order to have our first born son, Oscar, whom I absolutely adore and think the world of. But I remember the wrestle that I had to go through in this process, trying to hold both my faith and the very deep desire to have a healthy child, having experienced some very great challenges and complications prior to this. The only way that I could safely have my baby was to go through the IVF process, so that meant I had to weigh this whole decision up and think through carefully what this meant for me, given my own personal religious beliefs. Being able to arrive at a realisation that I personally could choose to perhaps restrict how my IVF procedure would go, such that I would just look at fertilising the number of eggs that we intended to use, was a very difficult decision, but it was one that I had to weigh up carefully and where I realised the deeply personal aspect of legislation and techniques like this. This is an area where there is no easy decision. You weigh up the consequences heavily and deeply, and they are very personal. Many—not all, of course—have a deeply held religious belief that life begins at conception. For me, it's because I believe that as humans we are made in the image of God and that is why human life is so sacred. As such, I foreshadow that I will support any appropriately worded amendments that may be moved in this House that would seek to remove the technique of pronuclear transfer from this bill.

I also raise some concerns regarding certain provisions in the bill that allow parents to request that only male embryos be implanted and that any female embryos be discarded for medical reasons. Under current Australian law, sex selection of embryos under assisted reproductive technologies is already permitted in cases of a serious genetic condition, and it is unclear why a licence holder could not simply rely on this existing provision and why this bill explicitly states that selection of male embryos over females is permitted. Should there be appropriately worded amendments made in this House that remove this sex selection provision from this bill, I would also support this in the House. This medical advancement allows that descendants of those born from mitochondrial donation will have two sets of genetic material. It's one of those issues which, again, I've had to weigh up very carefully. I acknowledge that I'm not a scientist. I acknowledge that these are matters that go way beyond what perhaps we as legislators—

The SPEAKER: Order. It being 7.30 pm, under the resolution agreed to, the debate is interrupted. The member will be able to continue her remarks at a later hour.

Mrs WICKS (Robertson) (20:00): As I was saying before, while I am no scientist, I do give deep consideration to some of the ethical and faith based issues with aspects of this legislation. I have really wrestled with a number of the concepts that are outlined in this bill, particularly given my own personal situation a number of years ago, which I outlined. I had to wrestle through that for a personal decision that I am very glad to have undergone.

I believe that more consideration needs to be given to some other aspects, including the potential permanent modification of what is called the human germ line. 'Germ line DNA' refers to the tissues derived from reproductive cells that eventually can become incorporated into every cell in the body of the offspring. This modification could potentially lead to potential for off-target effects such as addition in the wrong places. There are also concerns about these same techniques being used for non-therapeutic purposes—for example, height or eye colour. While only one other country, the United Kingdom, has legalised mitochondrial donations—it did so in 2015—I understand that there are some concerns about this kind of manipulation in other countries in the world and that around 40 countries have signed a memorandum on any methods that edit the human germ line. It is for this reason that I believe that we should tread with great caution to ensure that robust safety measures and safeguards are in place to protect future generations.

This bill establishes a staged approach to implementing the technology should this legislation be adopted. Under stage 1, donation would be legalised for certain research and training purposes and to support selection and licensing of a pilot program for impacted families. Under stage 2, mitochondrial donation would be permitted in clinical practice more broadly if the initial pilot program were to be successful. A regulatory framework will be established to ensure that this process is managed effectively and in line with community expectations. The role of the current Embryo Research Licensing Committee of the National Health and Medical Research Council will be expanded under this bill to include licensing and oversight of research and training in this area.

Children born using this technology still have two biological parents: a mother and a father. Children will inherit characteristics and personality traits from their biological parents, as the female donor only provides healthy mitochondria. Donor rights and responsibilities will also be based largely on current regulations. This includes that mitochondrial donors would not be considered legal parents, in line with the current arrangements for sperm and egg donors under the Family Law Act 1975, and that children conceived by mitochondrial donation will have the right to apply for identifying information about their donor when they turn 18 years old. This bill aligns with other Australian laws preventing exploitation and incentives for donors and allows donor eggs to be provided voluntarily from family members, friends or individuals who agree to donate.

Severe mitochondrial disease can have a really devastating impact and effect on families, including causing long-term ill health and poor quality of life. In Australia, around 56 children are born with a severe form of the disease each year. I want to acknowledge and welcome the advance in genetic science which gives all of us hope for a world without mitochondrial disease.

I support the intention of the bill and I believe that we must work to lower the risk of transmission of mitochondrial disease. However, as I have outlined in the House tonight, we need to: consider the implications of some of the techniques that could be potentially used to achieve successful mitochondrial donation; ensure that the frameworks needed to regulate this kind of technology are in place; and understand the impact it could create for future generations.

Given the concerns I have raised tonight about some aspects of this legislation, I intend to abstain from the second reading vote on this bill. But I will be supporting any sensible and carefully drafted amendments that seek to deal with some of the concerns I have raised, should they be moved in this place. I hope that there is a way through which considers some of the faith based issues that I and, no doubt, others will raise, and that others have raised with me in the community when I have spoken to people who are interested in this particular issue.

In closing, I thank the government for providing a conscience vote on a matter that is as deeply personal as this, and I also thank all members of the House for their thoughtful consideration of the matters we are debating tonight and for the very insightful contributions we have heard.

Ms PLIBERSEK (Sydney) (20:06): I thank the member for Robertson for her contribution. I think the contributions of members on both sides of this debate have been very thoughtful and very considered. It really is the parliament at its best. We are having a conscience vote on an issue that I know is deeply personal for a lot of people. I want to say tonight that I know there are genuine views on both sides, with people in favour of this legislation and people who are concerned about this legislation. While I respect all those views I will be voting in favour of this legislation, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I believe that if we have the opportunity to prevent the suffering of children, to extend their lives, we should take that opportunity.

I understand that some people in the community have a concern that this is a slippery slide into designer babies, into choosing the genetic make-up of children in the future. I understand the member for Robertson's concerns. She was speaking about the different types of mitochondrial donation techniques, the maternal spindle transfer technique as compared with the pronuclear transfer technique. I have thought deeply about these issues and I genuinely believe that, with the pain, the suffering, the shortened life span and the illness suffered by many children who have a mitochondrial disease, the sadness of children's families and the impact on those families make these scientific advances worth pursuing.

This bill amends existing legislation to make mitochondrial donation legal for research, training and human reproductive purposes. As others before me have explained, mitochondrial disease refers to a group of inherited conditions caused by mutations in a person's DNA impacting their mitochondria—the part of our cells that helps the body produce energy. When these cells don't function properly, the body can experience organ failure, serious illness and death, particularly when the mitochondrial disease affects high-energy-use organs like the heart and the brain. But, of course, there are a broad range of impacts that can be experienced by sufferers of these conditions. It's extremely serious. Children with severe cases suffer tragically shortened life spans, usually between three and 12 years. Currently there are no available cures. There is a lot of encouraging research into elements of treatment, but there is no cure. Prevention is, I believe, obviously something we should be aiming for.

About one baby a week is born with mitochondrial disease. That is one family every week who is getting the news that the life of their beautiful new baby is likely to be shorter and that there are likely to be significant health impacts during that shortened life. The aim of this bill is to give parents who are at risk of passing on this disease options to have biological children without those children carrying increased risks of these diseases. Mitochondrial donation involves creating an embryo through IVF using DNA from the prospective mother and father as well as healthy mitochondrial DNA from a donor. It is worth restating, of course, that in Australia we are bound by an existing regime that ensures that that donation is made not for financial gain but altruistically.

The bill facilitates this change by changing existing legislation to ensure that it's no longer an offence for the purposes of reproduction and under relevant mitochondrial donation licenses to create a human embryo that (a) contains the genetic material of more than two people and (b) contains heritable changes to the genome. There are tightly established processes around this. The bill takes an approach that is staged and controlled, with the hope that the techniques will be safe and that there will be no unforeseen consequences in opening up this approach.

As the member for Macarthur, Dr Mike Freelander, has said, this isn't about allowing a free-for-all for genetic alterations; it's about providing strict legislative oversight to allow one or two clinics to begin trials. I want to congratulate the member for Macarthur, the member for Higgins and the others in this parliament who have been working in a very cooperative way to advance this bill. The minister for health, the shadow minister for health and the former shadow minister for health, Chris Bowen, have all been very supportive of progressing this issue. I understand that people of good faith will disagree with these changes, but it is my belief that, as long as we can establish proper safeguards, our priority should always be the health and welfare of children. No child would ever make the choice to be born with these conditions that can be so life limiting, and I think that if we have the opportunity of giving more children the chance of a life free from mitochondrial disease it is important that we take that opportunity.

I have spoken to Sean Murray, the CEO of the Mito Foundation. Sean came to me a few years ago, beginning the process of lobbying not just on this bill but on a range of better genetic testing for parents and a range of other changes that the Mito Foundation want to see. I want to thank Sean for explaining how important this change is, and I want to congratulate the Mito Foundation on the wonderful work they do: educating people about mitochondrial disease; talking to parents who are likely to have a child with a mitochondrial disease or who have had a child born with a mitochondrial disease; supporting those families; backing the research; fundraising to do more research on treatment and prevention; and setting up the Mito Registry, which allows sufferers of mitochondrial disease to register to be part of clinical trials to access new treatments and new medicines and to be part of other studies. The Mito Foundation have obviously been championing this legislation and doing amazing work, both in their lobbying and in the fundraising they need to do to keep going. Their Bloody Long Walk was held just recently. I know that it's a very difficult environment for fundraising at the moment, but I want to congratulate the Mito Foundation on the fundraising that they have achieved and congratulate the people who have been involved in that.

Sean told me about the challenges facing people affected by this condition and how it has impacted generations of his family. So, as well as thanking him for sharing his story and thanking the Mito Foundation for the work they do, I want to thank the brilliant doctors, nurses and other health professionals that support children and some adults who are suffering mitochondrial diseases. I want to also thank the researchers who give people hope for treatment and cure. And I want to thank all of those families, in particular, who have been campaigning for this change—Sean Murray and the Hood family, Maeve's parents—whose advocacy over so many years has resulted in this bill. The reason I will support it is that, if we can prevent children being born with a condition that shortens their lives and comes with pain and suffering, I believe that we should.

Mr ZIMMERMAN (North Sydney) (20:16): I intend to speak only briefly tonight on this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I do think it is important, particularly in the context of a conscience vote, that members indicate to their communities where their views lie in relation to this matter so they understand the vote they are about to take. I'm delighted that this has been the subject of a conscience vote. I can think of a few other issues where I would like to see a conscience vote as well over the weeks ahead, but it is an appropriate matter for us to be considering in this way.

I particularly want to thank the Minister for Health and Aged Care, Greg Hunt, for his work to make sure that the entire parliament has been able to consider what is obviously a very significant issue. I know his shadow minister has done the same. I particularly want to highlight the work and the contributions during this debate of the member for Higgins and the member for Macarthur. We are blessed to have two such eminent doctors and medical specialists within our ranks, and I think it improves our capacity and the quality of debate in this parliament.

I also want to give an acknowledgement to Professor Carolyn Sue, who is the executive director of the Kolling Institute of Medical Research at the Royal North Shore Hospital. Carolyn spoke to me about this legislation, or the concept of mitochondrial donation, many, many months ago. She is one of the leaders in the field of understanding mitochondrial disease, she is a strong advocate for this bill and she is a very impressive medical professional, and I am grateful for the dedication that she has brought to this issue.

For me, whilst I understand the reservations some members of this House have, the issue is very clear. This is about providing a new opportunity that didn't previously exist for so many Australians who have mitochondrial disease, and I particularly think of the children and their parents who encounter the devastating diagnosis that mitochondrial disease is present. It is a disease that affects people in different ways. It affects different organs of the body. The mitochondria are the battery packs of our cells. The manifestation of a genetic mutation does affect people differently, but the prognosis for many is so devastating.

As chair of the Standing Committee on Health, Aged Care and Sport, what I do know is that rare diseases like this can scar families forever, both because of the level of care that's required and often because the prognosis can be so grim. During my time as chair, I have met with, heard from and read the writings of so many parents and so many medical professionals who have highlighted the important potential that we have to start to address some of those rare diseases that have eluded medical science to date. Mitochondrial disease is one of those. It is extraordinary that we are debating this bill today because it reflects just how far medical science has progressed over the last decade. It reflects the work that's being done in so many areas, with genomics and precision medicine. It has opened an opportunity to improve the quality of life and prevent serious illness in newborns and to ensure that parents can go forward knowing that they're not risking having children that might suffer these ailments.

So, in a circumstance where 120,000 Australians carry a mitochondrial mutation, where 56 children each year are born with mitochondrial mutations and potential for disease, this bill makes sense. I particularly want to acknowledge the testimony that we heard in this place from the member for Mayo about her own family circumstances, about her own grandchild. That was incredibly moving. I spoke to her afterwards. When you see the photos of that baby, that infant, knowing what he will be deprived of in the years ahead, it just makes sense that we pass this legislation today. Yes, there are ethical issues, but this represents a very cautious approach. It represents a staged approach. It is world leading. The UK is the only other nation that's been down this path before us in the way that we're proposing. But I do have a high degree of trust in our medical experts and our medical scientists. Therefore, it will give me a great deal of pleasure to provide the hope to so many families that supporting this bill will entail. I commend the bill to the House.

Mr MORTON ( Tangney — Minister Assisting the Prime Minister and Cabinet, Minister for the Public Service and Special Minister of State ) ( 20:21 ): I rise to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. Parenthood is a gift. It's the most precious gift, having a child with the characteristics and personality quirks of yourself and your partner, and when a couple is unable to have a healthy baby, we must, as a community, do all we can to assist. Under Medicare we provide access to IVF technologies, we have allowed surrogate arrangements, and once a child is born we do all we can to make sure that that child can have the very best medical care and start to their life.

The quality of a life lived does not determine the value that is inherent in it. All life, at all stages, has inherent dignity, value and worth, and it is critical that, as we seek to debate these difficult issues that cut to the heart of our morals and values, we keep that at the front of our minds at all times.

Mitochondrial disease is an insidious, incurable and often fatal condition that can be caused by over 250 different gene abnormalities. Women with mitochondrial disease can pass the disease to their children, and the mechanisms for doing so are multifaceted and complex. We know that the disease can be passed on through the mitochondrial DNA, but it can also be passed on through a woman's germline DNA.

We know that mitochondrial donation does not cure mitochondrial disease, and it's not effective for asymptomatic women who are mitochondrial disease carriers, or those with DNA mutations—which account for half of all mitochondrial disease cases—or for those instances where new genetic mutations occur spontaneously in the embryo. However, genetic manipulation through mitochondrial donation may allow some women with known mitochondrial disease to have a genetically related baby which may be free of mitochondrial disease.

But the gift of parenthood in such circumstances—or indeed in any circumstances—should not override the rights of the child. This is a complex genetic manipulation process, and all of the associated ethical concerns should be addressed through the use of a donor egg or existing egg and sperm screening techniques. But it's understandable that this would not address the natural desire of a couple to have a child that is genetically related to both parents. I can understand that.

I want to clarify that it's important for me, and I expect for us all, that we provide hope wherever it's possible, to relieve suffering and to improve human life. Yet, at times, we need to look at the research and the scientific and medical techniques and procedures, and decide whether it's a path that we should go down. These are not just personal medical decisions. These decisions have long-term consequences for families and for generations should there be any unintended or unforeseen consequences of the procedures. These decisions go to the heart of how we protect our common human genetic legacy. I'm not a scientist, and I've found it challenging to absorb all of the concepts and nuances of this scientific research. I'll support a number of amendments in order to ensure this bill gives the greatest protections to the most vulnerable in our society. I appreciate the member for Menzies and his conviction in bringing forward these amendments.

The banning of sex selection for embryos is the first amendment to this bill that I will vote in favour of. It is vital to the equality of our society that we do not seek to prioritise or favour children of one sex over another. I do worry that the ability of couples to select children on the basis of sex will see entrenchment of gender imbalance amongst us.

Secondly, I'll be supporting the amendments to ban post-fertilisation techniques such as PNT. I cannot support a process whereby a zygote is intentionally created but then is not given the opportunity for that life to continue and to flourish. The technique of choice in the UK takes a fertilised egg from the mother. The DNA is extracted and put into a fertilised egg from the donor and the father which has the DNA removed. This is the pronuclear transfer method. In this case, one embryo has been created which is not 'for the purpose of achieving a pregnancy in a particular woman', as is required by current legislation. To fertilise an egg and create the conditions for life only for the purpose of destruction is not something that sits comfortably with me.

Finally, I will support amendments to improve the reporting frameworks and time lines and to see an increase in clinical trials before moving ahead with these techniques. It is vital that, if this bill is to pass and the opportunities for mitochondrial donation begin to take place, the science and all the protections for those who will be taking part, including any potential children, are as robust and rigorous as possible.

I've researched the issue as extensively as I can and considered the correspondence I've received from various advocacy organisations. I've come to a conclusion based on the research and my own conscience. I thank all of those who have contacted me on this particular matter.

This bill reverses the longstanding prohibition on heritable human genetic manipulation. Mitochondrial donation allows changes to the heritable genetic information of a child and will affect that child, their children, their grandchildren, their great-grandchildren and the many generations to come. That's why it's important to make sure that the provisions of this bill are considered with the utmost care and diligence.

I want to thank my colleagues in this chamber who have taken the time to wrestle with these vexed issues. Though we may have arrived at different outcomes, all should be commended for the respectful way we've been able to engage in this complex and difficult debate. This displays the best of our democratic process.

While I do have some reservations around the implications of this bill, should the amendments brought forward that I will support be voted down, I will not take any action to prevent the passage of this bill. I'm actually confident this bill will pass, and I hope that those whom this bill seeks to assist find the comfort and help that it looks to bring. I hope that it's successful. I hope that we make technological advances so more parents can receive the gift of parenthood, which I have had the privilege to receive.

Mr ZAPPIA (Makin) (20:27): I begin my remarks on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 by quoting the Australian government Department of Health website on mitochondrial donation. The very first line says:

Mitochondrial donation is an IVF-based assisted reproductive technology. It has the potential—

and I stress the word 'potential'—

to prevent mitochondrial disease in babies born to mothers who may otherwise pass on the disease.

This legislation, as other speakers have already pointed out, enables a staged process for mitochondrial donation. The process does not provide a cure for those children already born with the disease, nor does it prevent future children from being born with the disease. The two-stage process, however, does follow a similar process commenced in the UK in 2015. The two-stage process will firstly allow the selection and licensing of a clinical trial that could run over a 10-year period, whereby mitochondrial donation will be provided to selected families—again, I stress the words 'selected families'. The very selection process itself is a matter that could be argued about as well. If successful, the procedure would then be made available more broadly across Australia. It would be made more broadly across Australia if it were embraced and adopted by each of the state and territory governments, and we've got no certainty about that either.

The legislation has been the subject of extensive community consultation and review by the Senate Community Affairs Legislation Committee. I note that in that review the committee did not form a recommendation; they simply presented their evidence from the inquiry. I have to say I thought it was very good evidence from all parties that made a submission in respect to this very matter.

The legislation also invokes several human rights including the right to health, the right to life, the obligation to consider the best interest of the child, the right to privacy and the right to freedom of opinion and expression. Again, we could debate each and every one of those matters with respect to this bill, but I don't wish to do that; I simply raise the point that there are several other matters that are associated with this proposal. I don't believe that anyone in this parliament wants to see children or their parents suffer in any way. I think that that's been very clear from each of the contributions that I have listened to in the course of this debate—and, I might say, I've listened to just about everyone's contribution to this bill.

Preventing suffering is the objective of this legislation. The illness that mitochondrial donation hopes to prevent is complex, and the procedure proposed is untested and controversial. I believe the UK trials are the only documented trials in the world. There may be others taking place that we don't know about, and I suspect that that may well be the case, but, in terms of what we do know about, the UK trials, which were legislated in 2015, some six years ago, are the only ones that we have to rely on. My understanding is that they commenced at Newcastle University in 2018. To date, we have had no information about the success or otherwise of those trials. So it makes you wonder: 'Why is that? Why has no information come out of that research over the last three-year period?' Indeed, I'm not even aware of whether there have been any successful births as a result of the trials that have taken place there.

A paper prepared by three academics from Newcastle University and published in Science and Society in August 2020 concludes that mitochondrial transfer is a potential cure—again, I stress the words 'potential cure'—for many diseases but proof of efficacy and safety is still lacking. I want to quote only a section of that paper because I think it's very relevant to this issue. The paper is headed Mitochondrial transplantation—a possible therapeutic for mitochondrial dysfunction? It goes on to say:

The inference, stretching back to experiments in the 1980s, suggests that it may be possible—at least for careful injection of freshly isolated mitochondria … but the efficiency of this process is extremely poor, and without a strong selection for the injected mtDNA and time to facilitate the selection, the overall effect on cell function will be minimal. Irrespective, mitochondria, particularly those that have lost their membrane potential, are constantly turned over in the cell inferring that if transplanted mitochondria had any benefit, this may be just relatively short-lived.

Considering all these caveats, it is difficult to see how transplantation could lead to long-term benefits directly from the transplanted mitochondria.

The authors of that paper are not opposed to the trials. I make it clear that their comments are in no way implying that they oppose what is happening at Newcastle University. It begs the question: given that we've got the trials in the UK and given that only people who are at very high risk of passing a serious mitochondrial disease to their children are eligible for the treatment in the UK, why is it that we have no information, and why is it that there is such a restriction? Why is it that only people who have a very high risk of passing on a serious mitochondrial disease are eligible for the trial? It tells me clearly that there are very genuine concerns about even the trials in Newcastle. I have no doubt that they are trying to manage their process as well as they can.

With those comments, I am left with these questions. Firstly, why is it that no information has been released about the UK trials? I would have thought that if the trials had been operating successfully they would want that information to be released. However, there might be a good reason for that. Secondly, why is that no other country has legitimised this procedure? I have no doubt that there are researchers right around the world who would be aware of this procedure, yet no other country seems to be following that path. Why is that? I have not heard anyone making a contribution to this debate explain why that is the case. What research is currently underway, both here in Australia and elsewhere in the world, to cure children born with mitochondrial disease? I've heard very little about that. It seems to me that our focus should be as much on the children who are already born as it is on those whom we might try to help in the future. Finally, what options are available to parents who live with the risk of mitochondrial disease right now?

There were some caveats requested by GeneEthics in their submission to members of parliament, to whom I have no doubt they would have written, and to others. They said, I think quite properly, that if the legislation is to pass they would like to be assured that there would at least be things like annual reports to parliament, standalone laws so that decisions aren't made simply by regulation, proper counselling services for people who are going to be engaged in the trials and clear lines of accountability for those who are conducting the trials.

Lastly, we haven't heard from anyone about the potential risks or adverse effects of this procedure. Again, most of the speakers have come into the chamber, quite rightly wanting to support whatever it is that we can do to avoid children being born with mitochondrial disease, but I haven't heard of any medical report in respect of the risks of the proposed procedure. I have listened to the passionate speeches of other members, including that of the member for Mayo, whom you yourself, Mr Deputy Speaker Zimmerman, referred to. I received an email from a family in my own electorate, who lost their nine-month-old daughter to mitochondrial disease, asking me to support this legislation. I have no doubt that they would have gone through a terrible period. I personally know of infants who have died from an incurable illness, and I have felt the heartache that it caused their parents. I've read in full the paper from Oliver Hervir, which was circulated by the member for Macarthur and to which he referred. It's a very good paper. I think it tries to summarise the issue very, very well. But my role in this parliament is to make evidence based decisions that ensure that the unintended consequences don't outweigh the possible benefits that we are seeking. Nor do I want to give false hope to desperate parents whilst possibly diverting research dollars away from other cures.

I do welcome the two-stage approach that is proposed in this legislation, and I certainly welcome the highly regulated and reviewed clinical trials process that is being proposed. There is no question that, if this legislation goes through, it gives me a high level of confidence and comfort that there will be adequate safeguards put into the trial process. But the unanswered questions still remain, and to my mind there is still no clear way forward. Neither approval nor rejection of this legislation, to my mind, provides certainty. I will comfortably accept the will of this parliament, but I am still to be convinced that this legislation is driven more by compassion and hope than it is by proven science.

I will finish with a quotation from a submission made by the Robinson Research Institute in Adelaide, which is a branch of the University of Adelaide. I'm familiar with the Robinson Research Institute; I've been through their research facilities. The facilities are very impressive, and the people who work within the institute are very impressive. The Robinson Research Institute is a medical research institute that comprehensively addresses how to give all children the healthiest start in life. I'll quote part of their submission to the Senate committee. They said:

In summary, our primary concerns with the currently proposed Mitochondrial Donation Law Reform are that:

1) it allows genome modification in human embryos and

2) the possibility that children conceived in this manner could have developmental defects because the technology has not been tested and refined to a level appropriate for clinical use.

We believe that it is essential to answer the above questions by conducting further research before Mitochondrial Donation be permitted for use to treat carriers of mtDNA disease.

The Robinson Research Institute, as I said, is a credible body that I have a lot of faith in. That is their view, and, unless I hear differently, that will be my view.

Mr LEESER (Berowra) (20:40): I intend to make a short contribution to this debate, and I have wrestled, as so many members have, with the issues that underlie it. Mitochondrial disease refers to a group of largely inherited genetic conditions that can significantly lower an individual's health and life expectancy and that may be fatal. Mitochondrial disease is difficult to diagnose. Currently, there's no cure, and treatment options are limited largely to the management of symptoms. Severe mitochondrial disease can have a devastating effect on families, including the premature death of children; painful, debilitating suffering; long-term ill health; and poor quality of life. The common factor among mitochondrial disease is that the mitochondria are unable to completely burn food and oxygen to generate energy which is essential for normal cell function. This is a disease that's often inherited. Symptoms might include poor growth, developmental delays and muscle weaknesses. The risk of developing serious illness due to mitochondrial disease is considered to be from one in 5,000 to one in 10,000. One in 200 Australians are estimated to be predisposed to mitochondrial disease.

Mitochondrial donation involves the removal of nuclear DNA from a patient's egg containing faulty mitochondria and inserting it into a healthy donor egg which has had its nuclear DNA removed. This can be done before the egg is fertilised or post fertilisation. The fertilised egg is transferred into the mother exactly as per current IVF practice. As the nuclear DNA is retained, the unique genetic information that makes us who we are and determines what we look like is passed on from mother to child but the mitochondrial defects are not. Mitochondrial donation is currently prohibited in Australia, as the current act prohibits the creation of human embryos by fertilisation with genetic material from more than two people. The only country in the world where it's currently legal is the UK. What the bill before the House, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, will do is amend the existing Commonwealth legislation to allow for mitochondrial donation to be introduced into Australia for research and human reproductive purposes.

Maeve's Law is named after five-year-old Maeve, who lives with Leigh syndrome. Legalising mitochondrial donation would allow impacted Australians to have genetically related children without the risk of them inheriting mitochondrial DNA defects which would drastically limit their lives. Aside from the devastating physical and emotional impact on patients and their families, many patients have repeated and prolonged hospital visits and are unable to work, and may need full-time care. Whilst mitochondrial donation techniques result in an heritable change to the genome, they do not involve gene editing of either the nuclear DNA or the mitochondrial DNA, which has been expressly prohibited in the bill.

Under this bill, donor eggs may be provided voluntarily from family members, friends or individuals who agree to donate eggs or have eggs that are in excess of their own needs from IVF clinics. A two-stage implementation approach is proposed to introduce mitochondrial donation in Australia. Stage 1: mitochondrial donation would initially be legalised for certain research or training purposes and to support selection and licensing of a pilot program to deliver mitochondrial donation to impacted families. Stage 2: mitochondrial donations would be permitted in clinical practice more broadly, depending on the outcomes and an evaluation of the initial pilot program. The role of the current Embryo Research Licensing Committee of the National Health and Medical Research Council would be expanded under the bill to include the licensing and oversight of research and training licences, a clinical licence for the initial pilot stage and future clinical practice licences using mitochondrial donation techniques. The use of specified mitochondrial donation techniques would be subject to strict licensing and regulatory conditions which would be overseen by the Embryo Research Licensing Committee of the National Health and Medical Research Council, and individuals seeking to access the program would require approval from the ERLC based on clinical recommendations.

On the ethical and other issues that have been raised by this bill, I note that my friend the member for Menzies has circulated some amendments. Some of those amendments I intend to support and some I won't. I particularly want to support the amendments relating to prohibiting these techniques for using these technologies for sex selection. I don't believe that assisted reproductive technology should be used for sex selection. I also support proposals to improve reporting requirements from the National Health and Medical Research Council.

I've considered the ethical implications of this proposal more broadly and have great respect for my friends who have serious ethical concerns about mitochondrial donation. Many of those ethical concerns are aligned with views about IVF and egg donation more broadly. I should say, both from a theological perspective and also from a personal perspective, I don't have an issue with IVF or egg donation and it would be hypocritical for me to say that I had a view with assisted reproductive technology.

I want to acknowledge my friend the member for Boothby, who's in the chamber tonight, for the wonderful work that she has done in this place on endometriosis. Like the member for Boothby, my wife suffers from endometriosis, and we would not have our son, James, who's now 3½ nor our daughter who is due next year without the benefit of assisted reproductive technology. I, therefore, find myself in support of the use of this technology more broadly.

The other thing that I should say is in considering these matters I sought the advice of Rabbi Gab Krebs of Masada Synagogue, an Orthodox rabbi and a great scholar. In fact, he's due to become the rabbi of Moriah College next year. He consulted Jewish authorities in Israel as well on these issues, and I note the words of Lord Robert Winston, the distinguished biologist, bioethicist and Orthodox Jew. The perspective of Orthodox Judaism on mitochondrial donation, as is the perspective on IVF and egg donation more broadly, is that there is no particular prohibition in Orthodox Judaism in relation to the use of these technologies.

The interesting debates in Orthodox Judaism about the question of mitochondrial DNA relate so often, as these questions do in the Halakah, to the question of identity. If you have a non-Jewish mother who has donated the mitochondria, is the child Jewish? Or: if the non-Jewish mother is the egg donor and the Jewish mother is donating the mitochondria, because a child is a Jewish under in Orthodox Judaism if their mother is Jewish—this has raised some interesting Halakah debates which are not entirely settled, and I'm sure will continue to be debated as these matters go on.

Having considered this matter and thought about the ethical implications of my own faith tradition, I have come to the view that, subject to some of the member for Menzies' amendments which I support, the bill should be broadly supported.

Mr STEPHEN JONES (Whitlam) (20:47): I come to the dispatch box in the debate with the necessary degree of humility. I was a lawyer before coming to this place, not a scientist. Everything I know about the science of this is based on what I've read of scholars far more learned in these subject matters than I. I'm also not a person who lives with the disease. Every bit of personal knowledge that I have about mitochondrial disease has been gleaned from listening to the exceptional debates that have been given by colleagues in the chamber over the course of the last three days, the things that I've read and from consultations with local constituents who've been forthcoming with their views and personal experiences, some of which I'll reflect upon in my contribution.

The bill, if passed, will legalise the donation of healthy mitochondrial DNA into egg cells. It'll allow the use of a safe and highly effective medical procedure, which has now been proven overseas for a number of years. It was first legalised in the United Kingdom in 2017. The US also allows the procedure, although under more limited circumstances. But, most importantly, and the thing that is bearing upon my consideration of the issue, it's going to help to ease needless pain and suffering, and that has been determinative of my approach to the issue.

Mitochondria is the cell structure that makes our daily miracles possible. It has its own DNA structure separate from the nucleic DNA that determines what we look like. I didn't know about these things until I researched the background to this bill, and I'm a better person for it. Mitochondrial DNA, on the other hand, is the power grid for human existence. Laughing, running and even sleeping—none of this would be possible but for the energy that mitochondria provides at the molecular level, so a minor defect in mitochondrial DNA can cause major health issues. It is often very fatal for a newborn babies. It also causes a wide range of complications for sufferers old and young—stroke, deafness, blindness, even childhood dementia. Those with a defective gene can live for years without even knowing it until the debilitating symptoms begin to appear. There is no cure. The best hope to defeat this disease is its prevention. That is the hope contained within this bill, and it is why I will be supporting this bill.

Along with the modified IVF technology with which so many Australian families are already familiar, this bill will allow doctors to replace mutated mitochondrial DNA with healthy DNA. In doing so, it will break the chain of hereditary gene defects and begin the march towards eliminating mitochondrial disease. It is not beyond the realms of possibility that, like other diseases, it could be eradicated. In Australia, this would save 56 babies a year from either premature death or a lifetime of pain or needless limitation. It would save the families of those children the anguish that raising a child with this condition bears. It would reduce just a little bit of the pressure on carers by reducing the demand for the resources that they lovingly, without a grudge, provide to support them. This is exactly what this parliament should be doing.

I acknowledge those who argue these clear benefits must be weighed against the religious, ethical and moral convictions, and the cost and benefit. The medical procedure that this bill would allow involves the transfer of healthy mitochondrial DNA from a donor egg into the egg of a mother carrying an embryo. As such, it requires a donor egg, which, as various submitters have argued, means the creation of that egg for the specific purpose of carrying out that medical procedure—that is, not of conception but of carrying out this procedure. Submissions from many faith groups and others have raised questions about the ethics of this. We cannot and should not blithely dismiss or disregard these objections. I respect their convictions on those issues, but I personally am of the belief that the benefits to those 56 families of the 56 infants born with mitochondrial disease every year outweigh these ethical considerations and concerns. Those babies and their families deserve a chance at a life without the pain and limitations that mitochondrial disease brings.

If some choose not to take up the medical option that the passing of this bill would provide because of their personal convictions, I understand that. But I don't believe that it is the role of this parliament to prevent that option being available to those families who know with some certainty that they will be passing this disease on to their children. This point was brought home to me loud and clear earlier when I took the time to discuss the issue with a constituent of mine, Rhonda Murray. Rhonda has faced mitochondrial disease across generations of her family. I want to thank her for her advocacy. She told me of how the disease robs the body of energy and how it can strike vital organs at any time without warning. Strokes, hearing impairment and severe fatigue can suddenly develop with little or no warning.

Rhonda's mother was 40 years of age before she began showing the crippling symptoms of fatigue and multiple strokes. Once the symptoms take hold, there is no turning back; they are there for life and they are untreatable. When symptoms occur in babies, the results are serious and often fatal: difficulty breathing, difficulty eating and listlessness. Rhonda herself has inherited the genetic mutation that causes mitochondrial disease and has, in turn, passed it onto her two daughters. She's fighting hard, along with her family and others, to get this bill passed. She's not doing it for her own sake—her fate is sealed—but so that her daughters can one day go on to have healthy children of their own in the knowledge that they won't be passing that disease onto another generation of Murrays. Hearing Rhonda's advocacy on this issue on behalf of her future grandchildren was powerful, to say the least. So I'll be voting on the bill and I'll be considering the amendments that have been foreshadowed. I understand that the member for Menzies takes a different view to me on these. But I know him to be a thoughtful contributor to debates in this place so I'll be considering the amendments that he moves on their merits, together with those that have been foreshadowed by other speakers in this debate and moved by government members or others.

On a day on which this parliament has been occupied by some of the worst behaviour that we've seen this year and—can I put it without passing judgement—some of the less wonderful debates, I think it is a pleasure for all members of this place to be closing the proceedings on a debate where we've seen some of the very best contributions, even from those who I strongly disagree with. In my view, a conscience vote in this parliament always brings out the very best. Some of the debates that I've heard in this debate and in other conscience debates in this place have been of a very high calibre indeed. It just goes to show that our democracy is robust and it brings forth some of the very best and the very worst that we see in public discourse in this place and outside of this place.

I'll be voting for the bill. I thank members of this place for the opportunity, and all of those who've put their effort into ensuring the bill comes before this house before the close of this session this year.

Mr ANDREWS (Menzies) (20:56): The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 amends the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002 in order to make mitochondrial donation legal in Australia. The purpose of the bill is to allow women to have a biological child in a way that minimises the risk of transmission of the effects of mitochondrial disease. As many members have pointed out, it's a disease for which there is no cure, regrettably, and it leaves children suffering from seizures, from fatigue, from multiple organ failure, from heart problems and, in severe cases, from death. Here in Australia it's estimated that around 56 children are born with a severe form of this disease each year.

Many members have spoken of their hope that these novel techniques will alleviate this disease. Our emotional reactions are valid. To wish to relieve suffering is a very human reaction and a very human desire. However, for me there are other considerations that need to be weighed in this discussion, and in coming to a decision in what is a conscience vote, or free vote, in this place. This debate has been conducted with civility and decorum. In coming to my decision I recognise and respect that there are a range of views, each informed by a desire to respond in the best possible way to the circumstances. It's in that spirit that I offer my contribution this evening.

I believe we need to understand what this bill will do. First, the bill legalises, under specific conditions, practices which less than 20 years ago were prohibited by this same parliament as unacceptable and attracted custodial penalties. These include creating, for the purpose of reproduction, a human embryo that (a) contains genetic material of more than two people and (b) contains heritable changes to the genome. That in itself is not an argument for change; I'm simply pointing out that something that this parliament regarded as unacceptable not that long ago is now being proposed to be changed.

Secondly, there is no evidence to date that these practices will either cure or effectively treat mitochondrial disease. There is currently much research and clinical practice devoted to looking for a cure or for a treatment for ways of alleviating the condition. Genetic technologies—in particular, gene editing—hold out hope in the future for a genuine cure.

Thirdly, the practices foreshadowed in this bill are unlike any existing form of health care or artificial reproduction. Some proponents suggest that the procedures are simply extensions of existing practices, such as organ transplantation and assisted reproductive technologies. I contend that this is not so. In organ transplantation, DNA is not passed onto future generations. In current reproductive technologies, neither human eggs nor human embryos are modified in the radical ways proposed in this bill.

Fourthly, mitochondrial donation is yet to be proven safe and efficacious in human research. The US Food and Drug Administration has taken the view that all forms of mitochondrial donation, whether using male or female embryos, constitute germline editing and has maintained its prohibition on clinical trials for this reason. The contribution of DNA, whether mitochondrial or nuclear, to the genetic make-up of a child is yet to be understood. Mitochondrial DNA, even in small amounts, may contribute to personal characteristics in a child in ways that are not yet recognised. It is not yet known whether DNA from the nucleus or the mitochondria will in fact be compatible. Nor is it known whether, given that up to three per cent of the mother's mitochondria is likely to be passed on, the disease will not rebound in future generations.

Much reference has been made to the UK, where this research has been underway for some five to six years. There's one clinic there which is authorised. We are told that 21 couples have received treatment, but there is no data about the effectiveness of that treatment, even in a de-identified way, that's available to us. The member for Makin, in his contribution tonight, referred to a paper written by a number of the scientists involved in those trials in the UK, and even those scientists who are proponents of this technique still say that this is simply something that still has potential and that safety and efficacy is yet to be proven. There have been reports of possible use in Mexico and Ukraine, but there are no verifiable, respected reports in the medical or scientific literature. And, as I said, the techniques remain banned in other areas.

So I have a number of concerns or reservations. The first relates to the mitochondrial donation techniques. The bill prescribes five techniques, and these are set out in a diagrammatic form on page 67 of the explanatory memorandum. Two techniques involve the transfer of material between eggs—that is, the maternal spindle transfer and the germinal vesicle transfer. Three other techniques involve the transfer of material between zygotes or embryos—namely, pronuclear transfer, first polar body transfer and second polar body transfer. These three techniques necessarily involve the destruction of the zygote or the embryo. I note in passing that, under the bill, only two techniques—namely, maternal spindle transfer and pronuclear transfer—are permitted for the clinical trial licence phase. Of these two techniques which are permitted if the bill passes in the forthcoming future, pronuclear transfer involves the destruction of the zygote or the embryo.

Accordingly, my concern is about the destruction of the zygote or the embryo, one of the lines of techniques which would be permitted by this bill. Accordingly, I foreshadow that I will move amendments at the detailed stage to remove from the bill the techniques that involve the destruction of a zygote or an embryo. This would allow the research to continue using gametes. Given the experimental nature of what is being proposed, the absence of any data from the UK and the lack of any evidence that these techniques will achieve what is being proposed, it is entirely reasonable, I submit, to ban the deliberate destruction of the zygote or the embryo at this time. Moreover, we are told that the early stages of research could take a decade. If so, there is a case for the less destructive techniques to be explored first.

My second reservation relates to the provision for the availability of sex selection under this bill. Under proposed section 28Q, after attending pretreatment counselling, a patient and her spouse, if any, can request to have only male embryos selected for implantation where it is deemed safe and practical to do so. This is notionally because it is said that there is less chance of transferring defective mitochondria to a male baby—an admission, I note in passing, that in itself is about the experimental, uncertain nature of these techniques. I note that the UK legislation does not appear to allow sex selection. Accordingly, I propose in the amendments being circulated to remove that provision from the bill.

My third area of concern relates to reporting requirements. I believe that in something as significant as this—undertaking research which has not been undertaken in this country before and has possibly only been undertaken in the UK—there should be some annual reporting to the parliament about the research which is undertaken. I don't believe that a review after seven years is sufficient to inform either the parliament or the people of Australia as to what's occurring in relation to this research, if it occurs.

My fourth area of concern relates to a technique being proven before it's used in general clinical practice. These matters are contained in the amendments which have been or will be circulated.

However, I understand from discussions that I've had today that two of these areas of concern will be addressed in government amendments—namely, the concerns about sex selection and the concerns about the reporting. If that is the case, when we reach the consideration in detail stage of the debate on this bill, obviously I won't proceed with my amendments in relation to these issues. However, I foreshadow that I will move to put the amendments in relation to the other matters. If these matters are not addressed tomorrow by the amendments which the government is proposing, obviously I will put to the House all four sets of amendments in relation to this matter.

Like other speakers, I have given much consideration to these matters. Indeed, it's not the first time that I have considered some of these matters. I was here, as some members were, almost 20 years ago, when this whole area of cloning and stem cell research was considered by the parliament. Indeed, I chaired the committee that looked into it prior to the legislation being passed. My position is consistent with that which I held at that stage. It's one that, if these amendments were passed, would actually allow the research to continue, but without the destruction to embryos or zygotes and in a way which would not permit, for the first time in this country, sex selection to occur. I commend the amendments to the House.

Debate adjourned.

House adjourned at 21:08