Linda Reynolds (WA, Liberal Party) Share 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.'