Perin Davey (NSW, National Party, Shadow Minister for Water) Share 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.

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

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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.