Key points
- The Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 broadens disclosure of information provisions in the Australian Organ and Tissue Donation and Transplantation Authority Act 2008.
- The amendments allow the Organ and Tissue Authority (OTA), DonateLife agency staff and authorised family members to publish, disseminate or disclose information about deceased donors/recipients for the purposes of the OTA’s community awareness, promotional, educational or commemorative activities. Such activities are intended to encourage people to register on the Australian Organ Donor Register and have conversations with their family about organ donation.
- The amendments are not intended to facilitate direct contact between donor families and organ and tissue recipients.
- A number of states and territories are similarly reviewing or amending their legislative provisions regarding disclosure of information identifying organ and tissue donors and recipients.
- The Opposition supported the passage of the Bill through the House of Representatives but has indicated it will seek to have the Bill referred to a Senate committee for further consideration.
Introductory Info
Date introduced: 24 May 2023
House: House of Representatives
Portfolio: Health and Aged Care
Commencement: The earlier of Proclamation or six months after Royal Assent
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.