Bills

Births, Deaths and Marriages Registration (Tissue Donation Statements) Amendment Bill

Introduction and First Reading

The Hon. N.J. CENTOFANTI (Leader of the Opposition) (16:31): Obtained leave and introduced a bill for an act to amend the Births, Deaths and Marriages Registration Act 1996. Read a first time.

Second Reading

The Hon. N.J. CENTOFANTI (Leader of the Opposition) (16:32): I move:

That this bill be now read a second time.

Today I introduce the Births, Deaths and Marriages Registration (Tissue Donation Statements) Amendment Bill 2022. This bill will amend the Births, Deaths and Marriages Registration Act to allow the next of kin of a deceased person to request a tissue donation statement be included on any certificate issued under the act certifying the death of a person.

The clarity, the term 'tissue' under the Transplantation and Anatomy Act 1983 is defined as 'an organ, or part, of a human body or a substance extracted from, or from a part of, the human body'. I will use the terms 'tissue donor' or 'tissue donation', and 'organ and tissue donor' or 'organ and tissue donation' interchangeably throughout this speech.

Organ and tissue donations transform and save many lives across the country each year. The lives of 1,174 Australians were changed last year as a result of receiving an organ transplant, thanks to the generosity of 421 deceased organ donors and their families. That is 1,174 fathers, mothers, grandparents, children, partners and friends. The decision to donate is an incredible gift.

The decision to donate is a decision no-one ever wants to make, that we all hope we never have to make. The generosity of those families to make such a selfless decision at such an awful moment in their lives is remarkable. Whilst being registered on the organ and tissue donor register helps inform a family of their loved one's desire, it is ultimately the decision for a family. It is a difficult decision must be made at a time of huge loss. The significance of the decision to donate organs and tissue, and the significance of these gifts themselves, cannot be overstated. They are gifts of life.

There are a number of ways in which organ and tissue donation can be acknowledged. Donor families and those who have received a transplant can write anonymous letters to each other. These letters must be anonymous because it is a confidential program. A national DonateLife Service of Remembrance is held online each year to commemorate the generosity of donors and their families. Events are also held across states and territories.

The annual Thankyou Day is held each year to publicly acknowledge the generosity of donors and their families. All Australians are encouraged to take part by creating and sharing a thankyou message on social media. The donor family lapel pin has been specially designed for families to wear to commemorate their loved one's donation.

The DonateLife SA rose planting ceremony is an annual event where a rose is planted to honour organ and tissue donors and their families for providing many with a second chance in life. This year's event will be held on Sunday 20 November at the Gift of Life Garden in Bonython Park. It will be an important opportunity to acknowledge, remember and thank those who generously donated the gift of life in 2021. National Donor Heroes' Night allows donor families to commemorate their donor loved one, recipients to thank their donor family and the community to acknowledge those involved in organ and tissue donation and transplantation by lighting a candle or turning on the porch light.

Whilst all of these events are incredibly important and have a vital role in commemorating the generosity and importance of organ and tissue donors in our community, there is still something missing: formal acknowledgement. Many families feel that the decision and the gift can be under-recognised. Families have spoken to me about how they feel there would be value in having a formal option to have their loved one's gifts recognised.

In recognition of the significant contribution that organ and tissue donors provide to the community, the ACT government passed legislation in May 2020 to provide the opportunity for this to be formally acknowledged in the death register and/or in a letter from the Chief Minister. The ACT was the first jurisdiction in Australia to provide this opportunity, as well as to apply to have the statement 'the deceased gave a gift of life, generously donating organs/tissue' added to the certificate.' I would like to commend the ACT Minister for Human Rights, Tara Cheyne, who championed this important legislation.

The bill I have introduced today is modelled on the ACT legislation. My bill will allow the next of kin of a deceased person to request a tissue donation statement be included on any certificate issued under the act certifying the death of a person. It will also enable the next of kin of a deceased person to request an intended tissue donation statement be included on any certificate issued under the act certifying the death of a person.

The inclusion of this provision will enable an acknowledgement of a deceased person who was an intended tissue donor to also be captured—for example, where a family says yes to donation but for a range of reasons the deceased's tissues were unsuitable for donation. Again, this is a recognition of the incredibly important decision that families and next of kin make in saying yes to organ donation. A technical reason for a loved one to then not be able to donate should not stand in the way of this intent and this recognition.

There are a number of key principles that will guide these acknowledgements. They are optional. They are an opt-in. It is entirely up to the family to determine if they want the donation recognised on a loved one's death certificate. For some families, the acknowledgement they receive currently may well be sufficient. They are not time-limited.

Families will have control to determine when, if and how they wish to have their loved one's donation recognised. This removes any urgency to make a decision about the acknowledgement and recognises that what might be right for each family can change over time. It also means that families whose deceased loved one was an organ and tissue donor before this change comes into effect will have these acknowledgement options available to them, with a death certificate reissued at no extra cost.

The request can only come from the next of kin. Some members may have questions, and rightfully so, regarding privacy, having the tissue donor included on the register and having the minister receive these details. Because it is the family that makes one or both of these requests, and because it is voluntary only, the number of people with whom this information is shared is limited.

The number of people who have access to the death register is also limited for a significant time period. In addition, body donations for medical purposes are not covered. Institutions that receive body donations must comply with national standards and inclusion in this bill would require institutions to step outside these standards, adding a layer of complexity and requiring a longer conversation.

A provision is also included to ensure section 39(1) of the Transplantation and Anatomy Act does not apply to, or in relation to, information disclosed for the purposes of making a request that a tissue donation statement or an intended tissue donation statement be included on any death certificate. Section 39 of the Transplantation and Anatomy Act makes it an offence to disclose information where the identity of a person listed in those paragraphs may become publicly known.

This provision in the bill has been included to avoid doubt that a person will not be in breach of section 39 of the Transplantation and Anatomy Act if they make an application for a tissue donation statement or an intended tissue donation statement on a death certificate. The information that is provided by the next of kin and that is ultimately included on the register and certificate is not to include information relating to any person to whom, or purpose for which, the tissue was donated by the deceased person.

Ensuring that families of organ and tissue donors can seek formal recognition of their loved one's life-saving gift is a small change that those of us in this chamber can make that will make a big difference to many. I acknowledge that it will not be for everyone, but for some it would mean a great deal to have an official acknowledgement of their loved one's donation. It will help ensure that the memory of the generosity of their loved one in life and in death is recognised and their actions live on.

I hope this legislation will help prompt important discussions about organ donation at kitchen tables and around lounge rooms throughout the state. If someone is registered on the Australian Organ Donor Register and they have had that conversation with their family, then the decision for families at that terrible sad time is made that much more simple in that they know their loved one's wish.

In 2021, the lives of 119 South Australians were changed by receiving an organ transplant due to the generosity of 50 deceased organ donors and their families. We have the highest registration rate in the country, with 73 per cent of the population registered to be a donor. We must continue to drive that number higher. Donating an organ or tissue is gifting someone another chance to be with their family, friends and community. It can change a life, and it can save a life.

I will continue to be a strong advocate for organ and tissue donation for the families of organ donors and those recipients. There are many more opportunities that we can explore to help promote organ donation and the recognition of those who have given the gift of life. The mySA GOV app could be used to link South Australians to the national donor registry by a link to the registration page. Organ donations and transplant messages could be included on the homepage of the mySA GOV app. We could explore an opt-out model for organ donation rather than an opt-in model.

There are currently around 1,750 Australians on the waitlist for an organ transplant. There are more than 13,000 additional people on dialysis. Some may need a kidney transplant. In 2021, 56 per cent of families said yes to donation when asked in a hospital setting. Only around 2 per cent of people who die in hospital each year can be considered for organ donation. Perhaps the most important statistic is that one organ donor can save the lives of up to seven people and help many more through eye and tissue donation.

Registration helps inform decisions. We must do everything we can to promote registration. Talking about your donor preferences will help inform your family's decision-making if they are ever in the unfortunate position to be asked the question. We must do all we can to encourage these conversations around our tables, and we must do all we can to recognise the decision of a donor and their family to give the gift of life to complete strangers. I would encourage members of this chamber to help recognise this by supporting this bill. With that, I commend the bill to the council.

Debate adjourned on motion of Hon. I.K. Hunter.