James Paterson (Victoria, Liberal Party, Shadow Minister for Cyber Security) Share this | Link to this | Hansard source

I rise to speak on behalf of the coalition on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023. I am advised that the bill amends the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to allow the Australian Organ and Tissue Authority and DonateLife agencies, grant recipients and authorised family members to publish, disseminate or disclose information about deceased organ or tissue donors or recipients without breaching the law of a state or territory. The purpose of this bill is to broaden the disclosure of information provisions in the act which govern the OTA and DonateLife's obtaining of consent for information on donors or recipients to be used in community awareness and educational activities.

The coalition has always had a longstanding commitment to increasing the rates of organ donation in Australia to alleviate the suffering of those on organ transplant waiting lists. We understand that organ and tissue donation saves and transforms lives, and we are proud of our record in overseeing an increase in donors through various targeted investments while in government. Right now around 1,600 people in Australia are on the waitlist for a transplant, and wait times can be anywhere between six months and four years. Australia's rates have improved in recent years, particularly during our time in government, with donation rates doubling between 2009 and 2019. However, the coalition understands that it is critically important to ensure that we can continue to encourage more people to register as donors and make transplants more accessible for the Australians who need them. We also recognise that the COVID-19 pandemic has had a significant and unavoidable impact on this area, as it did in many areas of our health-care system. This saw Australia's donation and transplantation rates drop in 2020, following the emergence of COVID-19, which makes it more critical than ever to encourage donation in Australia and make up for this period of decreased accessibility. We want to work with the government towards a goal to increase our organ donation rate to make sure that everyone who needs one or would benefit from an organ or tissue donation can help with a donated organ.

It is important that all Australians are aware of our instant online registration. It takes only a minute and can make a lifetime of difference for up to 10 people. By offering to be organ donors, Australians are signing up to the possibility of giving someone the gift of life, and the importance of that cannot be understated. This is why we are so appreciative of the amazing work that the Organ and Tissue Authority's DonateLife does in improving this area in Australia. I would like to take the opportunity to recognise DonateLife for the work they do across the community, including with individuals and families affected by organ, eye or tissue donation and transformation. I acknowledge their work in collaboration with the DonateLife agency in each state and territory and the specialist donation medical, nursing and support staff who deliver the nationally consistent program. Their work in increasing the rates of donation and improving outcomes for Australians who acquire an organ or tissue transplant is critically important. Improvements in this area can literally change and save lives.

Considering this bill intends to support DonateLife and other agencies and the work they do in this area, we absolutely support the intention of these amendments. We acknowledge that this bill builds on the coalition's work to improve greater rates of organ and tissue donation in Australia; however, we do have concerns with the amount of time and consultation undertaken prior to the introduction of this bill, particularly in regard to the change of definitions contained in this bill. Time and time again, we are concerned by this government's refusal to allow for appropriate levels of consultation on their legislation and to follow proper process, so we have some questions we would like to tease out in the Senate committee process. The opposition will support the passage of this legislation through the House and we will take time to explore these reforms properly in the Senate.

Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

In rising to speak on this bill, I would first like to pay tribute to the late Dr Carey Denholm AM, a friend of mine who died in 2018. Dr Denholm was a double-lung transplant recipient and a fierce advocate for the life-saving benefits of organ donation. Dr Denholm and his wife, Laura, are the co-authors of the book The CarerPartnering a transplant recipient, which talks about the vital role that carers play in supporting transplant recipients. Proceeds from the sale of this book help raise funds for transplant recipients, their carers and families. In November 2017, roughly a year before his death, Dr Denholm and his wife, Laura, invited me to a forum for the DonateLife thank you day, where I had an opportunity to meet with transplant recipients and families of organ and tissue donors. This was an incredibly powerful experience. There is, after all, no greater gift anyone can give than the gift of life. If you ever have the opportunity to speak to a recipient or the family of a donor, I strongly encourage you to do so, because if you do you will understand two things: (1) Organ donation saves lives; and (2) organ donation offers the families of donors the opportunity to find some positive meaning in the death of their loved ones.

Nothing whatsoever can take away the grief of death, but knowing that your loved one has saved a life and the thought that there is part of them living inside someone else, sustaining them and giving them life, is an incredibly powerful way to help them through the grieving process. We need as many Australians as possible to register for organ and tissue donation because the conditions that allow for donations are so rare. To be able to donate, an organ and tissue donor needs to die in hospital with well-functioning organs. Only two per cent of Australians who die in hospital meet this condition. In 2022 that meant 1,400 people died in a way that organ donation could even be considered. Of those 1,400, requests for donations were made to family members in 1,300 of these cases. In 701 of these cases, the family said yes, representing a national consent rate of 54 per cent, and 454 of those actually became organ donors, with their organs going to 1,224 recipients. This is certainly a good outcome but we could be doing better and we need to.

There are 1,800 Australians waitlisted for a transplant and around 14,000 additional Australians on dialysis, some of whom need a kidney transplant. Among the waitlisted Australians are people with heart failure, infections or defects, people with lung diseases such as cystic fibrosis or emphysema, people with liver disease, hepatitis B or hepatitis C or congenital liver defects, people with type 1 diabetes who need a donated pancreas and people who need bone tissue or skin grafts. Without a transplant, people on the waitlist face a severely diminished quality of life and many have life-threatening conditions.

There are two simple variables we need to change to increase the rates of organ and tissue donation. One is the number of Australians on the organ and tissue donation register. Despite the overwhelming majority of Australians supporting organ and tissue donation, only 46 per cent are on the register. Anyone aged 16 years and over can register and the process of registering only takes one minute. The other variable is the number of families that agree to donating even when the loved one who has just died is registered. That is why it is essential that anyone who registers as an organ and tissue donor discusses their organ donation wishes with their family. While the rate at which families say yes to donation at a little over half seems disappointing when the donor has already clearly indicated their wishes by registering, we should recognise they are having to make this decision quickly at a time when they have suffered a great personal trauma and are grieving. Taking this into consideration, a more positive way of looking at it is to acknowledge the extraordinary courage of the 54 per cent who agree to the request to donate and not seek to judge the remainder who said no. It's easy for a dispassionate observer to judge that decision—to say it defies logic. 'You cannot bring back your loved one. Why would you not want to save a life?' But, unless you have recently suffered the tragedy of the loss of a close family member, it's impossible to know exactly what you would decide in the situation. I just want to take a moment to reflect on the family members who have agreed to their loved ones' donation wishes to commend their bravery and to thank them for their lifesaving gift.

One of the key ways the Organ and Tissue Authority, or OTA, tries to get more donors on the register and encourage more families to honour the wishes of their loved ones who have registered to donate is community education and awareness. The statistics on the number of lives that have been impacted by organ and tissue donations are compelling. The most powerful messages OTA can use are the personal stories of transplant recipients and the stories of families who said yes to organ donation during one of the most tragic and confronting times of their lives. I have no doubt about this, having spoken directly to recipients and donor families many times but especially at an event organised by the Denholms five years ago. I sincerely thank Carey and Laura Denholm for giving me that opportunity. I hope more Australians can have the opportunity to hear such stories, which are both profoundly heartbreaking and heartwarming at the same time.

Unfortunately, telling these stories publicly is not as simple and straightforward as it may sound. Each state and territory has its own human tissue act. There are varying limitations in these acts around what information may be disclosed identifying donors or recipients. Three jurisdictions—the Northern Territory, South Australia and Western Australia—prohibit all persons from disclosing information, including the family members of donors. As you can imagine, this puts a huge constraint on the ability of the OTA and Commonwealth-funded state and territory DonateLife agencies to engage in community awareness activities involving donor families. Even something as simple as talking about a loved one's organ donation in a commemorative ceremony can be restricted by state and territory legislative provisions. This bill will nationally harmonise the legislative provisions in relation to the disclosure of organs donors' information. The bill allows the OTA and DonateLife staff to obtain consent from an extended list of family members of a deceased donor before including information about the deceased donor in their promotional and educational activities. If consent has been given by an authorised family member, as defined in the bill, the law of a state or territory will not prevent the publication or dissemination by OTA and DonateLife staff. This will enable families of organ donors to tell their stories and, in doing so, encourage other Australians to register as organ and tissue donors and to have conversations with their families about their donation wishes. The bill maintains privacy safeguards which help the organ and tissue donation system to function effectively. It will not facilitate direct contact between donor families and organ and tissue recipients. The rights of both donor families and transplant recipients who wish to remain anonymous will continue to be protected, while donor families and transplant recipients can continue to contact each other anonymously through their state or territory DonateLife agency.

The stories that the OTA and DonateLife authorities want to tell will be very powerful. There is broad agreement by psychology experts that storytelling is far more persuasive than facts and statistics, as it's far more effective at making the audience remember the message. For example, to read some of the stories that have been told, you can visit donatelife.gov.au, then click on 'Who will be helped by my donation', then 'Donation stories'. I'll quickly read one such story as an example:

When 10-year-old Sophie grew her angel wings in 2016 her family didn't have to think too long about giving the gift of life to others, in fact her mum Karina said it took about 30 seconds for them to decide.

"Of, course we would donate. Sophie always wanted to help people!" she said.

In fact, the last words young Sophie wrote on her whiteboard in her bedroom was "live life peacfuly (sic)".

"She had a beautiful spirit and caring nature, so we knew this was something she would want to do," Karina said.

"Knowing Sophie's generous donation has enabled many people to live a fulfilling life, warms my heart."

Not only will these stories help to overcome some of the stigma associated with organ and tissue donation, but they will hopefully help to overcome some pervasive myths. I'll take the opportunity now to tackle some of the myths about organ and tissue donation, but I also encourage anyone listening to check out the 'Myths and Facts' page on the DonateLife website. The first myth is that medical professionals will not try as hard to save the life of an organ donor. That is not only completely false but very hurtful to medical professionals. The first priority of medical professionals is to save a patient's life, and they work incredibly hard to do so. Organ donation is only considered after death, and the donation register will not be checked until after the patient has died. Another myth is that organ and tissue donation will disfigure the body. Organ and tissue donation is conducted by professional surgeons, who make incisions and dress the wounds carefully. All organ donors are treated with dignity and respect.

Then there are those who claim organ donation is against their religion. All major religions support organ and tissue donation. Some people think they are too old to donate their organs, but the fact is that people as old as 80 have been organ donors. Age is not a barrier to donation. As I've said, anyone over the age of 16 can register as a donor, and people of any age can donate. You also do not have to be in perfect health. In fact, even people who smoke, drink or have an unhealthy diet may still have organs suitable for donation. Finally, there is the myth that anyone in Australia can register as a donor on their drivers licence application. If you live in South Australia, you can register to be a donor when applying for or renewing your drivers licence, and then this is transferred directly to the Australian Organ Donor Register. In every other state and territory, you have to join the register directly. It takes one minute, as I've said, to join and roughly the same amount of time to check if you're already on the register.

In concluding, I would like to encourage all senators in this place and members in the other place, as well as anyone listening to these proceedings, to register as an organ and tissue donor if you have not already done so. As I said earlier in my contribution to this bill, the process of signing up takes one minute. In fact, jump on your computer or get the phone or tablet out and do it right now. What are you waiting for?

Just remember: if you are truly committed to being a donor should the conditions for donation be right, you must discuss your wishes with your family. If you have not spoken to them by the time they have to make the decision, it goes without saying that it will be too late.

A final point I'd like to make is that as a society we do not talk enough about death, dying, grief and bereavement. In fact, I think I'm the only person in this place that constantly talks about those issues. I often say this in discussion about palliative care, but it's also relevant to organ donation and the need to have conversations about donation wishes. I have made this point many, many times before and spoken about how it prevents Australians from having a good death or seeing their end-of-life wishes fulfilled. The ongoing taboo about discussing death is also leading to less conversation about what we do with our bodies after death. It's worth noting that 8 August was Dying to Know Day, an awareness campaign aimed at discussing and planning for end-of-life. I'm in no doubt that if death and dying were discussed more frequently and openly, particularly amongst couples and families who take the opportunity to express their end-of-life wishes, we would have more organ and tissue donations and more Australians receiving the life-saving transplants that they so desperately need.

Having said that, for those who have experienced the tragedy of the death of a loved one, I can appreciate that this debate may cause you distress. If so, I strongly encourage you to contact Lifeline on 131114 or beyondblue on 1300224636 or, in the case of a life-threatening emergency, to call triple 0 immediately. Thank you for the opportunity to contribute to the debate. I commend this bill to the Senate.

Perin Davey (NSW, National Party, Shadow Minister for Water) Share this | Link to this | Hansard source

I could not agree more with Senator Bilyk when it comes to the importance of organ donation. I commend her comments about getting online and registering for organ donation—a very important thing—and the need to ensure that your family is aware of your wishes to make sure that your final wish is respected by those around you and your organs or your tissues can be used to help prolong someone else's life. There is no greater gift than the gift of organ and tissue donation. It's a very important but challenging issue for families and for medical teams and the wider community. It is a very important conversation that everyone should have. For your family, knowing what your final wishes are actually helps in the grieving process and in the final days. The slogan 'Don't take your organs to heaven, heaven knows we need them here' epitomises the essence of why organ donation must be promoted, supported and encouraged. I lost my father last year, but we had spoken very openly in our family about what his wishes were, and we were able to donate his eyes to a lucky recipient. His beautiful eyes live on. Had his diseased not riddled him, we certainly would have been able to give more of his organs. But knowing that that was what he wanted made the whole grieving process that little bit easier for us, and the decision was so easy because we knew that it was what he wanted; it wasn't what we had decided.

But I do hold concerns about the current bill before the Senate, the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023, and the amendments it proposes to the Australian Organ and Tissue Donation and Transplantation Authority Act 2008. While it is a bill full of good intent, and I understand the aims of the bill—we want to be able to talk about organ donation, we want to promote it, we want to have education campaigns, so I totally get the intent of the bill—as we saw through the Senate committee, somehow the development of this bill has not quite hit the right tone and certainly has raised significant concerns amongst the donor community.

This bill was sent to the Senate Community Affairs Legislation Committee for an inquiry, and the inquiry reported in July. It was a very quick, short, sharp inquiry—two weeks—but it received 26 submissions from departments, organisations and individuals. The bill's explanatory memorandum outlines the purpose of the bill—'to broaden the disclosure of information provisions'—but, ironically, the interpretation of the bill from many donor families suggests that in fact the bill does the opposite. There is wide concern amongst donor families, and I've received correspondence from several donor families around the country raising their concerns that this bill may actually inhibit their ability, their capacity, to speak about what their family has gone through, be they a donor recipient or the family of a donor.

Organ donation rates are comparatively low in Australia. We do need to promote it. We do need to ensure that all levels of government support and encourage people to make a positive choice to donate life. But we need to make sure that we are hearing the concerns of the donor community. The Organ and Tissue Authority, known as the OTA, gave assurances to the committee that the bill would not affect ownership of information, and there is a big list in the explanatory documents for the bill that outlines how it will protect families from prosecution for communicating information about deceased donors under various state and territory laws. However, this was not reflected in the submissions to the committee. As one submission said:

As an organ recipient for some 33 years, in my opinion, this legislation is designed to restrict our Human Right of freedom of speech for all Donor Families and Families of deceased Recipients. When Donor Families say Yes to donation they will have, unbeknown to them, handed over control of their loved one's information to the government.

This is a concern that has been reflected in several submissions. Another submission said:

When I consented to the donation of Scott's organs and tissue, I did not consent to handing over ownership of Scott's donation story to DonateLife or the OTA.

In retrospect, I have serious doubts about whether I would have consented to the donation, if I had known that the Government would attempt to introduce such draconian measures restricting my freedom to share Scott's story.

…   …   …

I am also disappointed that no consultation was sought from donor families like mine …

…   …   …

Scott's organ and tissue donation provided comfort during the early days of my grief and is an immense source of pride to me and our families.

I find it inhumane that legislation could be drafted in this country that would seek to silence us.

That sentiment has been reflected broadly. Families who had agreed to organ donation hold serious concerns that through this new measure their right to share their story in their own way will be limited.

Other familiar themes from private organ donor families' submissions were that they were offended they had not been consulted. Indeed, it would appear that they were not given the Department of Health and Aged Care's own submission, which said they only had one objection from one donor family. That begs the question of how many donor families they reached out to, given that the inquiry had so many submissions.

It's on record that the coalition supports the intention of this bill. As I said in my introductory comments, we certainly acknowledge and recognise the need to further promote organ donation and get more people to sign up to the register. But it is our job in this place to ensure that in the drafting of well-intentioned legislation it doesn't inadvertently have unintended consequences. That is the concern that so many people have raised with me about this bill.

I acknowledge that in its submission the department of health was at pains to point out:

No provision of this Bill affects the ownership of information …

They were at pains to say:

There is no assumption that when a family consents to organ donation they have also consented to the use of their loved one's information …

They said:

The Bill does not propose any restrictions on how family members conduct community awareness … programs.

But if that's true, why are so many families interpreting the bill in another way? Why are so many otherwise very informed people involved in the donor family network interpreting it and saying the government's got it wrong?

As the chair of Donor Families Australia said in their covering letter to the Senate inquiry:

DFA is the only organisation that represents Donor Families nationally, and as such, we are able to speak from lived experience how these changes to the proposed amendment as mentioned will directly affect our membership and in fact donation and consent rates into the future.

As can be demonstrated by our submission we, and our membership, strongly feel that the wording of the proposed amendment is excluding families, in their grief, to their human right of free speech.

What I know is that once again, true to form, this Labor government has failed to do its homework and has failed to fully consult with the stakeholders and the very people who will be primarily impacted by this amendment. We're seeing time and time again with this government that they're at pains to show that they're getting things done, but they're not doing the research. They're not doing the fact-checking and they're not doing the ground truthing.

While our departments work very hard to give us fair and frank advice, sometimes they are not the purveyors of all the wisdom, particularly when it comes to issues such as this that are so personal. It really was incumbent on the department to have reached out. They should have reached out to Donor Families Australia and they should have heeded the concerns of Donor Families Australia and taken into consideration how they could better draft this amendment to ensure that all of those concerns were actually dealt with and that the amendment addressed the inadvertent consequences these organisations and the donor families are interpreting they will have. The government must recognise the negative aspects of this legislation and work to restore confidence to the Australian community. In saying that, we've already advised that we support the legislation. We support organ donation and we certainly support promoting it and trying to get more and more people to sign up to the organ donor register. I'll put it out there: talk to your families. I'm telling all of you as well: I'm an organ donor. Please, go your hardest. Take whatever you want. It's all yours when my time comes!

We will be supporting this legislation but I implore the government and the department to work with Donor Families Australia, the donor family community, the recipients and the families of donors, and make sure these concerns are addressed and resolved so they can freely talk about their loved ones in a way they are comfortable with while we continue to support, promote and educate about the value of organ donation.

Linda Reynolds (WA, Liberal Party) Share this | Link to this | Hansard source

I, too, rise to support this bill, the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023, along with my coalition colleagues. But I am very disappointed at the lack of consultation that was done with those who are gravely and very personally impacted by this bill. While we support it, for the reasons I'll go through I call on the government to further review this bill, to talk to Donor Families Australia and to make amendments that will get this right. We on this side acknowledge the bill builds on the coalition's work to encourage greater rates of organ and tissue donation in Australia—and I can confirm that, like Senator Davey, I am a very proud and willing organ donor.

While we support the intention of this bill, we still have very significant concerns over, yet again, the Albanese Labor government's failure to properly consult on and communicate these changes. These concerns were very poignantly reinforced by several submissions received by the Community Affairs Legislation Committee inquiry—most notably from Donor Families Australia, who, rather inexplicably, were not consulted by the government or the department in the preparation of this bill. The coalition, and I in particular, acknowledge the concerns raised by Donor Families Australia as outlined in their submission, including their extreme dissatisfaction at the limited consultation and their view that the bill fails to address the concerns of their members and failed to properly consult with the donor community. Time and time again we've seen, over the last 15 or so months, this government's refusal to allow for adequate consultation. Even where there is going to be bipartisan and multipartisan support for bills, they manage to stuff up the consultation—like with the 60-day pharmacy dispensing rule—on something we all agree on and get the policy so wrong.

I would now like to share the words of Bruce and Karen McDowell. Bruce is the chairman of Donor Families Australia. I will never forget the meeting I had with them both recently in Perth. While their voices were not heard, I would now like to read what I received from Mr McDowell both as the chairman of Donor Families Australia and as a father of a donor:

My name is Bruce McDowell, I am the Chairman of Donor Families Australia (DFA) and more importantly the father of Alysha, who became a tissue donor on the 15th Sept 2008.

Then he said this, and I think this demonstrates the problem with the lack of consultation by those opposite:

(I wish to advise you in providing this information about my daughter, I acknowledge that I have contravened legislation.)

That is one of the saddest things I have read and heard in a very long time, in looking across the table at both of them as they talk about their daughter and realise they are contravening legislation. He also provided me with a letter from the WA state health minister that said, 'I appreciate your valid concern that risk of prosecution may prevent donor families from speaking about their deceased relatives' donation.' The failure of this government to make sure that this legislation does no harm and in fact harmonises with state and territories legislation is an indictment on those who have gone through this process.

So after advising me of that, he goes on to say:

DFA is a national organisation of Donor Families that advocates and supports and raises awareness around organ and tissue donation. We have approximately 1,000 members and 2,900 followers on our facebook page. We recently reached approximately a quarter of a million people during our Donor Heroes Night event raising awareness of organ and tissue donation whilst honouring our Donor Heroes—

their loved ones.

We wish to bring your attention to problems with the proposed Bill …

As noted in my first paragraph I am being unlawful in making my daughter's information publicly known.

Why is Organ and Tissue Donation so complex and restrictive in Australia? If my daughter had passed away under different circumstances, such as suicide or drug overdose, as parents we could say … as we see fit, because there is no legislation directing otherwise. But in Organ and Tissue Donation we have legislation ruling what families can say and do at two levels of Government.

The optics of this Bill is terrible, it shows little to no respect for grieving families who are already going through enough without being told what they can say and do.

This Bill directly affects Donor Families of deceased donors. Despite this, not one donor family was consulted in the drafting of this Bill. It was DFA that raised with the Organ and Tissue Authority … two years ago that it and its DonateLife Agencies were, and still are, contravening their respective legislations. The Commonwealth Health Department in its submission to the Senate Inquiry acknowledged that DFA was not consulted despite being a stakeholder—

and I would say despite being one of the most critically important stakeholders in this whole process. He goes on to say:

DFA sought legal advice on the above mentioned Bill from the legal firm Lavan. An example of the restrictions imposed—

that their legal advice cited was this:

'These proposed amendments still do not allow authorised family members to directly publish, disseminate, or disclose information capable of identifying a deceased donor or recipient.'

That means individuals cannot publicly talk about their loved ones.

'For example, a family member could not go directly to a journalist to publish a story identifying their family member as a donor or recipient.'

This Bill encroaches on Donor Families basic Human Right of freedom of speech. This draconian Bill does not reflect current values of freedom of speech. Why do Donor Families need to be directed to four activities, as stated in the proposed legislation, before we feel safe about what we have said?

And remember, it is what they have said about their loved one. He says:

In England their NHS provides for Donor Families and Recipients to meet where both parties are consenting. The meeting is controlled by the Organ and Tissue Donation offices which ensures it is done with the right processes in place. This provides both consenting parties the opportunity of helping with their respective challenges and it can be seen world wide on many stages the benefits—

of the UK process. So he asks:

Why is the Government of Australia so eager to ensure consenting parties can't meet? Especially as our donation consent rates are at an all time low—

He believes it is time to look at a fresh approach for the system. He also said to me:

If you want to know more about how this will affect Donor Families please read the submissions from the Senate Inquiry.

He concludes his letter to me by saying this:

When this bill comes before the Senate please oppose it on the grounds that it is restrictive and shows little respect for families already going through the pain of losing a loved one and it will further damage the already floundering consent rate in Australia.

For all of those reasons, it pains me to support this bill, but those on this side have chosen to support the bill because the intention is good. But, as Donor Families Australia have asked of us in this chamber: please look at further amendments to the bill, so that donor families can own and control their loved ones' information. That is denied in this current bill before this place. Secondly, they ask us to look at further amendments so that consenting donor families and consenting recipients can be assisted by DonateLife so that they can meet, where they are both consenting. I'm almost speechless—which doesn't happen very often—to think, in this day and age, that we would prevent consenting donor and consenting recipient families to meet and share information about their loved ones—where they both consent to do so.

In conclusion, we know on this side of the chamber that the topic of organ donation is an emotional one and an important one. I would like to very much thank the families of organ donors and recipients for their submissions. I'd like to finish with the words of somebody else who made a submission to this inquiry. It was Mr Brian Myerson, OAM. He expressed frustration with this bill's apparent disregard for donor recipients and their families—the other side of the coin. He said the bill continues to 'deny the rights and liberties of donor families and organ transplant recipients' and continues:

These two groups have endured incredible hardships and suffering through sickness and death and are being denied the opportunity to divulge information about themselves and their loved ones as and when they wish. No liberal democracy should discriminate against these groups and should protect their basic rights such as freedom of assembly and free speech.

I will finish by reminding you of what Mr Bruce McDowell said to me in his letter.

… I am the Chairman of Donor Families Australia (DFA) and more importantly the father of Alysha who became a tissue donor on the 15th September 2008. (I wish to advise you in providing this information about my daughter, I acknowledge that I have contravened legislation.)

I think it is an indictment of those who rushed this bill through that it has been so poorly consulted and it hasn't been harmonised with state and territory legislation, and that for grieving parents—parents so proud their child has been a tissue donor—it is illegal to talk about their loved one in this way. So, while I and those on this side support the bill, I implore those opposite to listen to the words of organ donor families, the McDowells and the thousands of others and make further legislative changes to this legislation, so that no parent or family member has to say ever again: 'By talking about my loved one, I am contravening legislation of this nation.'

Tim Ayres (NSW, Australian Labor Party, Assistant Minister for Trade) Share this | Link to this | Hansard source

The Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 amends the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to allow the Organ and Tissue Authority, DonateLife agencies, grant recipients and authorised family members to publish, disseminate or disclose information about diseased donors for the purposes of the Organ and Tissue Authority's community awareness, educational or commemorative activities. I also note that the Assistant Minister for Health and Aged Care has written to the Attorney-General to request a review of organ and tissue donation disclosure laws by the Australian Law Reform Commission. The Senate welcomes the proposed review by the Australian Law Reform Commission and asks that the terms of reference for the review be published as soon as practicable. The Senate notes the role of donor families in providing expertise to the reform of donation disclosure laws. I want to thank senators who've contributed to this debate for their thoughtful and generous comments and indicating their voting intention in relation to the bill, and I commend it to the Senate.

Question agreed to.

Bill read a second time.