This Bills Digest replaces a preliminary Digest published on 26 May 2023.
Purpose of the Bill
The purpose of the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 (the Bill) is to amend the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 (the Act) to broaden disclosure of information provisions.
Background
Organ and tissue donation in Australia
Legislation currently exists in all Australian jurisdictions governing the transplantation of tissues and organs from living and deceased donors.[1] This legislation was introduced following an Australian Law Reform Commission report which recommended a uniform approach in Australia to transplant legislation. The purpose of this legislation is to govern who can consent to donation and under what circumstances.
As explained in the 2015 Review of the implementation of the national reform agenda on organ and tissue donation and transplantation prepared for the Department of Health, ‘the Australian organ and tissue donation system is based on an ‘informed consent’ or opt‐in model; requiring individuals to agree to donate their organs and tissue in the event of their death’ (page 12).
Establishment of the OTA
On 3 July 2008, the Council of Australian Governments endorsed a national reform program ‘to implement a world’s best practice approach to organ and tissue donation for transplantation’ (p. 6).
Following the enactment of the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 (the Act), the Australian Organ and Tissue Donation and Transplantation Authority (OTA) was established to implement the national reform program.
The OTA is an independent statutory agency within the Health and Aged Care portfolio, with the Department of Health and Aged Care responsible for overarching national organ and tissue donation and transplantation policy. The OTA works in collaboration with the DonateLife Agency in each state and territory and the specialist donation medical, nursing and support staff, who comprise the DonateLife Network. The OTA enters into funding agreements with the state/territory health departments to implement the organ donation service delivery model, consistent with the national organ and tissue donation reform agenda in the public hospital sector and, where mutually agreed, in the private hospital sector (p. 50).
The Australian Organ Donor Register (AODR) is managed by Services Australia and allows for individuals to record their organ and tissue donation decision. Regardless of whether an individual has provided consent for donation, the practice in Australia is to also seek agreement from a donor’s next of kin before donation proceeds (p. 12).
Sharing of information about donors
The current policy in Australia is that contact between donor families and those receiving an organ transplant is anonymous and ‘confidentiality and protection of the identity of those who donate organs and tissues is paramount’.
This is reflected in section 58 of the Act which prevents the OTA or the CEO of the OTA from publishing or disseminating information that is likely to enable the identification of a particular organ or tissue donor or recipient except where the donor or recipient (or where the person is under 18 years, their parent/guardian) or their partner has consented.[2] State/territory legislation also includes provisions which govern the disclosure of information and restrictions on disclosing information about the identity of deceased donors or recipients.[3]
As explained in the Minister’s second reading speech on the Bill:
Currently, there are provisions in both state and territory legislation, and the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 that prohibit the sharing of some information related to deceased donors and recipients for the purposes of community awareness and other educational activities by the Organ and Tissue Authority and DonateLife agencies …
This bill will amend 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 deceased donors for the purposes of the Organ and Tissue Authority's community awareness, educational or commemorative activities.
A number of states and territories are reviewing or amending their legislative provisions related to the disclosure of information that may identify donors and recipients. This appears to have followed 2021 legal advice sought by Donor Families Australia in Western Australia which suggested that Western Australian legislation was more restrictive than intended. Donor Families Australia has continued to campaign for legislative change.[4] An overview across various jurisdictions as at July 2022 is included in a DonateLife Network Update. In November 2022, the ACT Legislative Assembly passed the Health Legislation Amendment Bill 2022, which includes changes that will allow DonateLife ACT to share stories of individuals and their loved ones at commemorative occasions and in material that promotes the importance of conversations about organ donation.
Parliamentary committees in Western Australia and Victoria are currently undertaking inquiries into organ and tissue donation in their respective states.
Stakeholder response
At the time of writing, stakeholder responses and media reporting specifically on the Bill were not available.
Policy position of non-government parties/independents
The Bill passed the House of Representatives on 1 June 2023.
While noting that that the Opposition would support the passage of the Bill, the Deputy Leader of the Opposition, Sussan Ley, stated that there were ‘concerns with the amount of time for consultation that has been undertaken prior to the introduction of this bill, particularly in regard to the definitions contained in the bill’. Ms Ley indicated that the Opposition would be seeking to have the Bill referred to a Senate committee.
This was confirmed by the Shadow Assistant Minister for Regional Health, Dr Anne Webster, who stated:
… there are potential issues with the bill in its current form, particularly with the large expansion of the list of authorised family members who are able to provide consent for the disclosure of information. There is also limited detail around the process by which this consent will be sought. Once again, we are seeing a pattern emerge with this Labor government, which refuses to allow for appropriate levels of consultation on their legislation and fails to follow proper process. My colleagues and I will support the passage of this bill through the House, to then be explored in the Senate with a committee inquiry. Referring this bill to the Senate Community Affairs Legislation Committee will allow further adjustments to ensure that the bill is watertight and is as effective as possible.
Committee consideration
At the time of writing, the Bill had not been referred to, or reported on, by any committees.
Financial implications
According to the Explanatory Memorandum there are no financial impacts in relation to this Bill (p. 1).
Statement of Compatibility with Human Rights
As required under Part 3 of the Human Rights (Parliamentary Scrutiny) Act 2011, the Government has assessed the Bill’s compatibility with the human rights and freedoms recognised or declared in the international instruments listed in section 3 of that Act.
The Government considers that the Bill is compatible ‘because it promotes the protection of human rights, and where it may limit human rights, those limitations are reasonable, necessary and proportionate’.[5]
Key provisions
Currently the Act restricts the OTA or the CEO of the OTA from publishing or disseminating information that is likely to enable the identification of a particular organ or tissue donor or recipient except where the donor or recipient (or where the person is under 18 years, their parent/guardian) or their partner has consented.[6]
The main amendment contained in the Bill is the insertion of proposed section 58A.
Proposed subsection 58A(2) will allow a DonateLife Agency and grant recipients to obtain consent from an authorised family member for the disclosure of information about a deceased organ or tissue donor/recipient for the purpose of educational, commemorative, promotional and community awareness activities.[7]
The national DonateLife Community Awareness and Education Programme aims to ensure a nationally consistent, evidence-based approach to communications about organ and tissue donation for transplantation. It comprises DonateLife Week, Community Awareness Grants, media and public relations, community education and outreach, social media, and printed and online public information (p.51).
Proposed paragraph 58A2(e) makes clear that the publication, dissemination or disclosure must be made:
This reflects the limits of the Federal Parliament’s power to pass laws on this subject matter. Proposed subsection 58A(3) sets out similar provisions which will allow for the disclosure of information by an authorised family member of the deceased donor/recipient. Proposed subsection 58A(4) clarifies that these provisions will apply despite anything in a law of a state/territory.
As explained by the Member for Boothby, Louise Miller-Frost, in her second reading speech on the Bill:
This bill seeks to set a unified standard across the Commonwealth, and this has been reached in consultation with all relevant state and territory ministers. Once this bill is passed, and providing consent has been given by an authorised family member as defined in the bill, the law of a state or territory will no longer prevent the publication or dissemination of the information. This will enable the family of an organ donor to commemorate the gift that their family member gave—the gift of life for up to seven people—if that is their wish. I of course acknowledge that it will not be the wish of every donor family.
Proposed subsection 58A(5) allows for secondary disclosures of information that has been disclosed under proposed subsections 58A(2) and (3) for the purpose of educational, commemorative, promotional and community awareness activities.
The Bill will also amend section 58 of the Act to clarify that it only applies to the disclosure of information by the OTA and the CEO of the OTA where a person or their authorised family member has consented to the disclosure, with proposed section 58A to govern disclosures by DonateLife Agencies, grant recipients and authorised family members.
The Bill also provides for an extended list of ‘authorised family members’ of a deceased donor or recipient who can provide consent for the disclosure of information.[9] While the Act and the Australian Organ and Tissue Donation and Transplantation Authority Regulations 2020 currently have provision for the surviving partner, or (where the donor is aged less than 18 years) parent or legal guardian, of the donor or recipient who has died to provide consent to disclosure,[10] the amendments provide that an authorised family member includes a partner, a parent or legal guardian, a child, a sibling, a grandparent, a grandchild or those with kinship ties where relevant.[11]
The Minister’s second reading speech also states:
…these amendments are not intended to facilitate direct contact between donor families and organ and tissue recipients. Governments intend to protect the right of both donor families and transplant recipients to remain anonymous.