Chapter 1Introduction
1.1The Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 (the bill) was introduced in the House of Representatives on 24 May 2023 by the Assistant Minister for Health and Aged Care, the Hon Ged Kearney MP (the Assistant Minister).
1.2On 13 June 2023, the bill was introduced to the Senate and subsequently, the provisions of the bill were referred to the Senate Community Affairs Legislation Committee (the committee) for inquiry and report by 26 July 2023.
Structure of the report
1.3This report contains two chapters. This chapter sets out:
background information relating to the Australian Organ and Tissue Donation and Transplantation Authority;
the purpose of the bill;
an overview of its provisions; and
general information about the conduct of the inquiry.
1.4Chapter 2 outlines submitters’ views on the bill and concludes with the committee’s view and recommendation.
Conduct of the inquiry
1.5Information regarding the inquiry was published on the committee’s website and relevant organisations and individuals were invited to submit to the inquiry by 28June2023. The committee received 26 submissions, as listed at Appendix1.
Acknowledgement
1.6The committee thanks the organisations and individuals that made submissions to the inquiry. In particular, the committee thanks those individuals who shared their personal experiences regarding organ and tissue donation and transplantation.
Background
1.7The Australian Organ and Tissue Donation and Transplantation Authority, also known as the Organ and Tissue Authority (OTA), is a statutory authority responsible for delivering a nationally coordinated approach to organ and tissue donation and transplantation, in partnership with the states and territories (through DonateLife agencies), clinicians, consumers and the community.
1.8The OTA was established by the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 (OTA Act) and the Department of Health and Aged Care (the department) has policy responsibility for organ and tissue donation and transplantation.
1.9The OTA leads the national organ donation program to increase organ and tissue donation. The program was implemented to ‘improve practices related to deceased organ and tissue donation to achieve a significant and lasting increase in the number of life-changing transplants’.
1.10In her second reading speech, the Assistant Minister noted that since the creation of the OTA in 2009, more than 16000 Australians have received a transplant. However, she explained that few people have the opportunity to become an organ donor, with only around twoper cent of people who die in hospitals able to be considered for organ donation, or approximately 1400people per annum.
1.11The OTA is responsible for the delivery of public awareness and educational activities to increase community awareness of organ and tissue donation, encourage people to register their donation decision, and to commemorate donors and recognise donor families. The delivery of integrated communications and engagement activities is key to the success of the national program, which aims to build public support for organ and tissue donation and thereby increase the number of donors.
1.12Currently, there are provisions in both state and territory legislation, and the Commonwealth’s OTA Act, that prohibit the sharing of certain information relating to deceased organ and tissue donors and transplant recipients for community awareness and other education activities by the OTA and DonateLife agencies.
1.13The OTA Act also contains provisions which restrict the type of people who can consent to the sharing of information about deceased donors. Currently, section58 of the OTA Act establishes that consent for the sharing of information can only be provided by partners of the deceased donor or by parental guardians if the donor was less than 18 years old.
1.14The department explained that this restricts opportunities for some donor family members to consent to participate in public awareness and commemorative activities of the OTA and as a result, OTA and DonateLife agencies are limited in the ways they can deliver the national organ and tissue donation program and in particular, community education and awareness activities which involve donor families.
Purpose of the bill
1.15According to the Explanatory Memorandum for the bill, the purpose of the bill is to broaden the disclosure of information provisions in the OTA Act.
1.16In her second reading speech, the Assistant Minister explained that the bill would 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 OTA’s community awareness, educational or commemorative activities.
1.17The provisions would also allow the OTA and DonateLife agencies to obtain consent for this information, from an expanded list of family members of donors and recipients that includes a partner, parent, child, sibling, grandparent and grandchild.
1.18The Assistant Minister concluded:
This important legislative amendment will enable more families, who would not have otherwise been able, to share their extraordinary stories with the Australian community. This is crucial to improving donation outcomes in Australia.
Key provisions
1.19The bill comprises one schedule which would amend the OTA Act. If passed, the bill would commence on a day to be fixed by proclamation, or the day after a six‑month period after Royal Assent is received.
Disclosure of information
1.20Item 11 would add section 58A to the OTA Act, which outlines the circumstances under which information may be disclosed, provided an organ or tissue donation and transplantation has occurred and the donor or recipient has died.
1.21Proposed section 58A would provide that an authorised family member, a DonateLife agency or a person who is party to an in-force grant agreement (grant recipient) to publish, disseminate or disclose information about a deceased organ or tissue donor for the purposes of an educational, commemorative, promotional or community awareness activity that is relevant to an organ or tissue donation and transplantation matter.
1.22The proposed provisions also stipulate that the consent of an authorised family member must be sought in order for any publication, dissemination or disclosure of information by a DonateLife Agency or a grant recipient to occur.
1.23The bill also outlines the manner in which any publication, dissemination or disclosure may be made, and establish that the amendments do not allow for the publication, dissemination or disclosure of information for activities beyond the remit of the OTA and DonateLife.
1.24The proposed section also permits secondary disclosures of information that has been disclosed under the permitted conditions and specifies that these provisions will have effect despite any conflicting state or territory laws.
1.25Item 10 clarifies that under the proposed changes, published or disseminated information does not permit the identification or linking of transplantation recipients and their donors by the OTA or the OTA Chief Executive Officer.
Authorised family members
1.26Item 6 of the bill establishes the meaning of ‘authorised family member’ of an organ or tissue donor or recipient who has died. Authorised family members would include a partner, parental or legal guardian, child, sibling, grandparent and grandchild of a deceased organ or tissue donor.
1.27The proposed amendments also provide that if the organ or tissue donor or recipient has traditional Aboriginal or Torres Strait Islander kinship ties, authorised family members would include any person who is related to the organ or tissue donor or recipient under Aboriginal or Torres Strait Islander kinship rules.
Definitions
1.28Item 2 would insert the term ‘commemorative activity’ into the definition of ‘organ or tissue donation and transplantation matter’ under the OTA Act. According to the explanatory memorandum, commemorative activities include, for example, remembrance services, memorials and publications which aim to acknowledge and commemorate donors.
1.29The proposed amendments would also add the definition of a DonateLife Agency to the OTA Act – being an agency that has a role or function related to one or more organ or tissue donation and transplantation matters as declared by a Minister. The bill also establishes that the declaration of a DonateLife Agency by the Minister must include consultation with the relevant State or Territory Minister who is responsible for the administration of health matters in that jurisdiction.
Transitional amendments
1.30Items 12 and 13 clarify that proposed paragraph 58(2)(b) of the bill would apply to organ and tissue donors and recipients who died before, at, or after the commencement of this legislation.
Financial impact statement
1.31The Explanatory Memorandum stated there are no financial impacts for the Commonwealth in relation to the bill.
Compatibility with human rights
1.32The Statement of Compatibility with Human Rights (the statement) advised that the bill engages the right to self-determination and rights to equality and non‑discrimination.
1.33In regard to self-determination, the statement noted that the bill promotes human rights by including the consideration of kinship relationships in FirstNations communities in the consent-seeking process for disclosure of information or organ and tissue donors and recipients.
1.34Further, the statement explained that rights to equality and non-discrimination are promoted through the inclusion of authorised family members in this consent‑seeking process. Whilst the statement noted that the bill limits rights when deferring to parental or legal guardians of organ or tissue donors or recipients who are under the age of 18, when seeking consent for the disclosure of information, it noted that this measure is reasonable and aligns with other, similar legislation and existing processes for gaining consent.
1.35The statement concluded that the bill is compatible with human rights because it promotes the protection of human rights, and where it may limit rights, those limitations are reasonable, necessary and proportionate.
Consideration by other committees
1.36Both the Senate Standing Committee for the Scrutiny of Bills and the Parliamentary Joint Committee on Human Rights had no comments on the bill.