Chapter 2Views on the bill
2.1This chapter considers evidence received from submitters regarding the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 (the bill).
2.2The committee received mixed views amongst submitters regarding the bill. Broadly speaking, organisational submitters expressed general support for the bill and individuals expressed a range of concerns.
2.3This chapter will outline submitters views on the bill and will conclude with the committee’s view and recommendation.
Broadening disclosure of information provisions in the OTA Act
2.4Some submitters expressed support for the bill’s proposals to expand the circumstances for disclosure of information under the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 (OTA Act).
2.5The National Heart Foundation noted its support for the bill. It submitted that the proposed amendments would help increase community awareness of organ donation, which it noted is crucial to increasing the number of people willing to become organ donors.
2.6DonateLife Victoria also expressed support for the bill and considered it ‘critically important’ that information such as personal stories about organ and tissue donation and transplantation could be shared without breaching a law of a state or territory.
2.7Similarly, the Western Australia Department of Health (WA Department of Health) supported the intent of the bill and considered that the amendments would allow the Organ and Tissue Authority (OTA), DonateLife agencies and ‘authorised family members’ to publish, disseminate or disclose information about deceased organ or tissue donors or recipients, provide confidence that such disclosures can be legally undertaken.
2.8The WA Department of Health considered that these changes would benefit the wider community by raising awareness of the importance of organ donation and transplantation and also allowing families to commemorate such contributions by their loved ones. It also recognised that many donor families support the idea of raising public awareness about donation and registration and commemorating their family member in remembrance services.
2.9Transplant Australia, the national charity for organ and tissue donation and transplantation, welcomed the ‘clarification and certainty’ offered by the proposed amendments. It commended the Government for clarifying matters around the disclosure of identity and other donor information and for ‘giving donor families peace of mind in sharing their story for the benefit of all concerned’. Transplant Australia also noted that the bill could lead to uniformity in legislation concerning the disclosure of donors’ identities across Australia.
2.10In contrast, some submitters raised concerns that the bill would restrict families’ ability to communicate about their loved one or affect ownership of the information relating to deceased donors and recipients. For example, DonorFamilies Australia considered the bill seeks to restrict the use of donors’ names, information and story, to four activities for the purposes of the OTA and DonateLife agencies only. It submitted that the amendment ‘does not provide any relief for families or donors to speak freely’.
2.11Some individual submitters including Mr Warwick Duncan, MrBruceMcDowell and MsPhillipa Delahoy also raised concern that the bill would limit donor families’ ability to publicly speak about their loved one and would hand control of their loved one’s information to the OTA and DonateLife agencies.
2.12Further, Ms Cheryl Hardiman expressed concern that the proposed amendments would not allow for the disclosure of information within private forums of donor families and recipients. Ms Hardiman noted that such forums are ‘incredibly important outlets for sharing experiences around donation and transplantation’.
2.13The Department of Health and Aged Care (the department) acknowledged that the communication about deceased donors and recipients is a particularly important matter for many families who have lost a loved one. However, the department emphasised that no provision in the bill affects the ownership of information relating to deceased donors and recipients.
2.14In answers to questions on notice, the department confirmed that the bill operates ‘to enable disclosures of information where they are currently prohibited. It does not create any new restrictions on disclosures.’
2.15The department outlined that human organ and tissue donation and transplantation is regulated through each state and territory’s separate Human Tissue Acts (HTAs), and that some HTAs may restrict some communications. The Department stated:
This Bill is an interim measure to immediately address the specific issue around the disclosure of information only as it pertains to the OTA and DonateLife agencies or OTA grant recipients.
2.16The department also clarified that the bill does not impose any restrictions on how family members conduct community awareness, promotional, educational or commemorative activities, or how they engage in any other communications about their loved one. It specifically explained:
Where a family chooses to consent to the OTA or a DonateLife agency using information about their loved one for community awareness, educational, promotional or commemorative activities, that family will continue to be able to engage in other communications about their loved one. Where those communications align with the purposes of the OTA Act, it will operate to remove any risk of those activities being inconsistent with relevant state and territory laws.
Where a family does not consent to the OTA or a DonateLife agency using information about their loved one for community awareness, educational, promotional or commemorative activity, that family will continue to be able to engage in other communications about their loved one, and those activities are not affected by any provisions of this Bill.
2.17The OTA also confirmed that the proposed amendments would not prevent families from undertaking public awareness activities or commemorating their family member separate to those activities undertaken by the OTA and DonateLife agencies. Further, the OTA explained:
This is irrespective of whether the family has or has not provided consent to the OTA or DonateLife agency to use information about their loved one for community awareness, educational, promotional or commemorative activities.
2.18On the question of what ‘other communication’ might encompass, the department advised that it ‘refers to communication activities that an individual might undertake in a personal capacity that does not involve the [OTA].’ The department further elaborated:
Where the relevant state or territory legislation allows for the disclosure of deceased donor or recipient information by family members, families are able to engage in any other communications about their family member at their discretion i.e. discussing with a friend or neighbour or undertaking organ donor advocacy as an individual.
2.19Where family members do not consent to a loved one’s information being used, the department confirmed that:
The Bill does not prohibit or restrict these activities. Where the relevant state or territory legislation allows for the disclosure of deceased donor or recipient information, family members and other individuals (with the family’s consent) may continue to conduct these activities.
Increasing the number of authorised family members
2.20Some submitters supported amendments that would increase the number of family members who can provide consent to the disclosure of information about a deceased organ or tissue donor or recipient. For example, the National Heart Foundation considered that the broadening of the number of close family members who can consent to such disclosures, is an appropriate proposal, noting that the dissemination of this information can help inspire other individuals to register as potential organ donors.
2.21Further, the WA Department of Health submitted that the extended definition of ‘authorised family members’ as proposed by the bill acknowledges the variety of family structures in modern Australia, as well as First Nations kinship ties. It added:
The amendments provide protection to a broader group of people with legitimate status to provide consent; responding to the contemporary understanding of family relationships and culture whilst still providing guidance to OTA or DonateLife Agency staff when obtaining consent for disclosure.
2.22The OTA explained how amendments that enable family members to consent to share information can support awareness raising, help increase the number of registered donors in Australia, and give more family members the opportunity to commemorate their loved one:
By enabling family members to consent to share information to support these activities, the Bill will contribute to efforts to save lives by increasing awareness about organ and tissue donation, with the aim of more people registering and talking to their family about donation. And, in turn, increase Australia’s consent rate to donation in the hospital. This means more people saying yes to donation which will result in more people receiving a transplant. It will also give more family members from across Australia the option to participate in activities that commemorate their loved one and recognise and value the difficult decision to consent to organ and tissue donation.
2.23Ms Cheryl Hardiman expressed reservations about the bill’s amendments regarding authorised family members. Ms Hardiman considered this term to be ‘too official and overbearing’ and whilst she welcomed the proposed expanded list of eligible family members, she noted that families come in many shapes and sizes and that the preclusion of other family members, such as cousins or aunts, from speaking about a deceased donor at a commemorative event is ‘misguided and wrong’.
Privacy and ethical concerns
2.24Some submitters discussed how the bill may affect the privacy and confidentiality of organ and tissue donors and recipients.
2.25The Western Australian Department of Health outlined its support for amendments which clarify that proposals to broaden information disclosure arrangements under the OTA Act do not extend to facilitating links between organ and tissue donors and respective recipients:
The Department supports the clarification provided by Clause 10(3), that the expanded ability for OTA or OTA CEO to disclose identifying information for an organ or tissue recipient or donor does not include the linking of recipients and their respective donors. Under Organ and Tissue Authority policy, contact between donor families and those receiving an organ transplant which can be facilitated by DonateLife Agencies, is anonymous. This aims to protect important privacy principles which underpin organ and tissue donation and transplantation activity.
2.26The National Heart Foundation was of the view that the bill’s impact on donor privacy would be relatively small and that it ‘strikes the right balance’ between respecting the privacy of donor individuals and families, and the importance of showing the positive impacts of organ and tissue donation.
2.27The National Heart Foundation also commented that other privacy safeguards in existing legislation would continue to operate, and outlined that there are no proposed amendments in the bill that would allow any party to identify links between organ donors and recipients. It added that the bill does not propose any changes that would affect organ recipient privacy.
2.28The National Health and Medical Research Council (NHMRC) drew the committee’s attention to its 2016 publication Ethical guidelines for organ transplantation from deceased donors. The NHMRC explained that these guidelines provide a framework that guides ethical practice and decision-making regarding organ transplantation and contain information regarding the need to respect the privacy and confidentiality of donors, recipients and their families:
These Ethical Guidelines set out an overarching framework to guide ethical practice and inform decision making by everyone involved in assessing the eligibility of an individual for transplantation, assessing the suitability of donor organs for transplantation and allocating organs from deceased donors. These Ethical Guidelines include information about the provision of information the need to respect the privacy of donors, recipients and their families, including about maintaining confidentiality of all records and require compliance with all relevant legislation.
2.29The Transplantation Society of Australia and New Zealand outlined its support for community awareness activities regarding organ and tissue donation, but emphasised that any details disclosed about organ donors and recipients must be done so in a manner that ‘maintains the appropriate privacy and anonymity of donors/recipient pairs’.
2.30Conversely, Mr Bruce Dalgleish, a father and great uncle of two donors, suggested that direct contact between donors and recipients should be allowed if both parties agree to it, and that legislation should be amended to provide for this. He submitted:
Being in contact directly may help both parties to live their lives more fully [by] knowing the donor family or recipient [and knowing] who they are and how they are going, instead of getting anonymous letters or cards passed through a government agency…
2.31Other submitters, including Mrs Beverley Faulks, also canvassed concerns that the bill would affect or limit contact between organ and tissue donor and recipients.
2.32On this issue, the department and the OTA clarified that the intent behind the bill is to allow authorised family members to give consent to the disclosure of information about a deceased donor or recipient, not facilitate direct contact between donor families and recipients.
2.33The department confirmed that:
Non-anonymous (i.e. direct) contact will remain prohibited under state and territory law. The Bill does not change this.
2.34The department explained that Australia’s organ and tissue donation program is confidential, but that there are ways that donor families and recipients can communicate with each other anonymously through their jurisdictional DonateLife agency. The department confirmed that DonateLife agencies will continue to facilitate anonymously written contact between donor families and those who have received a transplant, should they request this.
2.35The OTA and the department noted that confidentiality and protecting the rights of both donor families and transplant recipients to remain anonymous, is paramount. Both agencies emphasised that governments intend to protect the right of both donor families and transplant recipients who wish to remain anonymous.
Consultation efforts
2.36Some submitters raised concerns in relation to the level of consultation that occurred regarding the bill. For example, Donor Families Australia suggested that there should have been ‘a proper and respectful consultation period with those that the legislation has been designed for’ prior to the passing of the legislation in the lower house.
2.37Similarly, an anonymous submitter strongly recommended that the government ‘consult with the people directly impacted before implementing’ the bill. Other submitters also raised concerns about consultation efforts.
2.38In its submission to the inquiry, the department clearly outlined its consultation process regarding the bill. It explained that all state and territory health ministers were consulted and given an opportunity to comment on the bill prior to its finalisation. The department noted that ultimately, all state and territory health ministers support the passage of the bill.
2.39The department also informed the committee that First Nations health organisations including the National Aboriginal Community Controlled Health Organisation, the Australian Indigenous Doctors’ Association, and the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives (CATSINaM) were consulted. Further, government agencies including the OTA, the Department of Prime Minister and Cabinet and the Attorney General’s Department were also consulted on the proposed amendments.
2.40The department advised that most stakeholders have been supportive of the bill’s intent, but noted it is aware of concerns raised by one stakeholder that the passage of the bill will restrict families’ ability to communicate about their loved one, and affect how their loved one’s information is controlled. As previously discussed in this chapter, the departmentadvised that these concerns are based on an inaccurate interpretation of the bill.
2.41The department reiterated the following:
This Bill is an interim measure to immediately address the specific issue around the disclosure of information as they pertain to the OTA and DonateLife agencies. A broader review of HTAs is required to properly resolve the disclosure of information issue as well as the other identified inconsistencies. The Commonwealth will continue to engage with jurisdictions to progress this work.
Committee view
2.42As many submitters highlighted, the benefits of organ and tissue donation and transplantation to our society are undeniable. Transplantation gives recipients a second chance at life and can also transform the lives of many other people around them, including family members, friends and others in the community.
2.43The success of Australia’s national organ donation program and the availability of organs and tissues for transplants relies heavily on the generosity of individuals and their families to donate. The committee understands that public awareness, education and commemorative activities relating to organ and tissue donation is key to the success of the national organ donation program and that donor families and transplant recipients play a critical role in the OTA’s delivery of these activities.
2.44The committee also appreciates that for donor family members, the ability to talk about their loved one being a donor can be an important part of their grieving process and allows them to celebrate their loved one’s life and the impact they have had on another’s through the selfless act of donation.
2.45The committee believes broadening the disclosure of information provisions in the OTA Act is appropriate and essential to increasing community understanding of the lifechanging impacts donations can have. It is also appropriate that family members are legally able to undertake this activity under a consistent and uniform framework across Australia.
2.46The committee also considers the expanded list of authorised family members under the bill appropriately reflects the variety of modern family structures in Australia and rightly recognises kinship ties in First Nations families and communities.
2.47The committee notes concerns from individuals that the bill would restrict families’ ability to communicate about their loved one or affect the ownership of information relating to deceased donors and recipients. However, on balance, the committee is reassured by evidence from the department and the OTA that confirms that the bill will not affect the ownership of information relating to deceased donors and recipient, and that the bill does not impose any restrictions on how family members conduct community awareness, promotional, educational or commemorative activities or engage in any other communications about their loved one.
2.48The committee also believes the bill and the current Act also appropriately uphold and safeguard the privacy and confidentiality of donors, without changing the joint policy of Australian governments not to facilitate direct contact between donor families and recipients.
2.49The committee recommends that the Senate pass the bill.
Senator Marielle Smith
Chair