FAQs

Organ and tissue donation is the act of giving organ/s or tissue/s from one person, a ‘donor’, for transplantation into another person, a ‘recipient’ who is very ill or has a medical condition. Organs and tissues can also be donated for medical and scientific reasons, such as for use in research.

Some organs and tissues can be donated when you are alive, however most organ and tissue donations are from people who have died.  A person may also arrange for the donation of their body after they die for the study of human anatomy.   

In Australia, you can choose to donate any or all of these organs:

• kidneys
• lungs
• heart
• liver
• pancreas
• intestine

 And any or all of these tissues:

• heart valves
• bone and bone marrow tissue
• skin tissue
• eye tissue
• stem cells

The disclosure of information means sharing or releasing details that could identify someone (personal information), to another person or organisation.

Organ and tissue donation is generally an anonymous act where donors and recipients of their transplanted tissues are not known to each other. The exception is when a living person donates an organ or tissue to a relative or close friend. 

When personal information about an organ or tissue donor or transplant recipient is shared, the person’s identity may become known publicly, for example outside of their close family and friends. Individuals and families need to be confident that their privacy will be respected. Therefore, it is important that personal information about organ and tissue donors and transplant recipients is protected as part of the donation and transplantation process. 

Section 39 of the Transplantation and Anatomy Act 1983 aims to protect the identity of organ and tissue donors and transplant recipients. 

The current wording in section 39 is very broad and may mean that the personal information about a donor or recipient cannot be shared publicly by any person without the consent of the person themselves. A deceased person (who was a donor or transplant recipient) cannot consent to the sharing of their personal information. 

Some donor families have expressed concern that they feel unable to publicly acknowledge or commemorate their deceased loved one or share stories about their donation. This is particularly important for families wanting to raise community awareness about the importance of organ and tissue donation. The proposed changes aim to address this concern while protecting the right of donors, transplant recipients and their families to remain anonymous.  

The proposed changes clarify that persons involved in donation and transplantation, for example health care workers, must protect the privacy and maintain the confidentiality of donors and recipients. Families of deceased donors and recipients will not be limited in sharing their stories. 

The proposed changes are not intended to facilitate direct contact between donor families and organ and tissue recipients.

The Draft Bill aims to provide legal clarity to families of deceased donors that they are not restricted in speaking publicly or sharing information about their loved one’s donation. This is also relevant to families of recipients who received a transplant during their lifetime, but who have subsequently died. 

The proposed changes clarify that restrictions on the disclosure of information about donors and recipients apply only to professionals and other persons involved in an activity, function or service relating to the removal of tissues, post-mortem examinations, or body donation. 

Those persons would include medical practitioners, nurses, Designated Officers for a Hospital, other hospital staff, and persons employed by other groups such as Universities and Australian Red Cross Lifeblood.

The Draft Bill, specifically clause 3(3), proposed subsection (1a), limits who the restrictions in section 39 apply to. The restrictions are only intended to apply to persons and organisations, who have knowledge of, or access to, information about a donor or recipient because they undertake a function or activity, or provide a service related to donation or transplantation under the Act.

 An explanation of proposed subsection (1a) is provided below. This list provides examples of the types of persons the restrictions intend to capture, and is not considered exhaustive -  

• Paragraph (a) applies to, for example, a person undertaking a role, function or activity, or providing a service, related to donation or transplantation under the Act (other than the next of kin of the donor or recipient), for example, a medical practitioner performing a donation or transplantation surgery;
• Paragraph (b) applies to, for example, a person who is employed by the person referred to  in paragraph (a), such as an office manager; 
• Paragraph (c)(i) applies to, for example, an organisation such as a hospital, at which the function, activity or service related to donation and transplantation is being undertaken, such as a medical practitioner performing a donation or transplantation surgery; 
• Paragraph (c)(ii) applies to, for example, other staff of the hospital.

The Bill aims to ensure that the restrictions would not apply to a relevant person’s next of kin who undertakes a function under the Act, such as providing a consent, or to other family members and friends of the relevant person who have knowledge of the donation or transplant because of their relationship to that person.

Personal information about children is protected. The proposed changes aim to clarify that a child donor or recipient cannot themselves consent to the disclosure of their personal information. The relevant child's parent (or guardian) would be able to consent to the public disclosure of information about the child should they choose to.

Living donors and recipients, or in the case of deceased persons, their next of kin or personal legal representative, can decide what information (personal or otherwise) is shared with who and for what purpose. When information about a person’s donation or transplantation is shared with others, this information may become known publicly.

Information shared to social media or with the media may become public at a time that may be stressful or emotional for the person or their family. The proposed changes will not limit reporting on organ donation and transplantation by the media, which may include personal information about a donor, recipient, or their family.

Donors, recipients, and their families will receive guidance from donation agencies and transplant units about the implications of publicly disclosing information. Individuals and their families will need to consider the potential loss of anonymity from sharing information, including to the media. 

Receiving a transplant, or a decision to proceed with a deceased donation can be an emotional time. Recipients and donor families will be encouraged to consider deferring the release of information to allow for greater anonymity during this time.

If you prefer that information about your donation or transplant is not shared publicly after your death, you are encouraged to speak to your family, legal personal representative and friends about your wishes. It is proposed that information about a deceased person’s donation or transplant would be treated in the same way as any other personal information about that person. 

Guidance from donation and transplant professionals about the implications of publicly disclosing information will be available. 

It is important that health care workers maintain the anonymity of donors and recipients and that the privacy and confidentiality of patients is protected. 

Personal information of patients is protected by both state and national legislation, the South Australian Health Care Act 2008 and the Australian Privacy Act 1988. 

SA Health collects health information to enable appropriate care and treatment. Further information about the management and protection of consumers' personal and health information can be found here.   

Living donors and recipients can choose to share personal information about themselves and can consent to the public sharing of personal information about their organ or tissue donation or transplantation. This remains unchanged by the proposed amendments.

Similar legislation, commonly referred to as the Human Tissue Acts, about the donation and transplantation of organs and tissues from living and deceased donors is in place across Australia. While the legislation is slightly different in each state or territory, they all intend to protect the identity of organ and tissue donors and recipients. 

Commonwealth legislation allows the Australian Organ and Tissue Authority, DonateLife agencies and specific family members to share information about deceased donors/recipients for certain awareness, promotional, educational, or commemorative purposes. These activities are intended to encourage people to register on the Australian Organ Donor Register and have conversations with their family about organ donation.

A few states and territories are similarly reviewing or amending their legislation to do with the disclosure of information about organ and tissue donors and recipients.

The Bill proposes to update the Act by ensuring that the language used throughout is modernised. These changes include ensuring the use of gender-neutral language. When the Act was originally drafted, it was common to use the general terms of ‘him’, ‘he’ and ‘his’.  We are proposing to update the Act to ensure it is consistent with modern ways of drafting legislation. It is also common for an Act to include a general provision that allows for the delegation of any Ministerial power or function. This would mean that certain administrative matters can be appropriately dealt with by someone other than the Minister to improve administrative processes.