The Senate is considering new laws that have raised serious alarm amongst families who have each contributed significantly to patients and the health system.
A Senate committee will report on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023 next week. The report will coincide with DonateLife Week.
According to the Bill's explanatory memorandum, its purpose is to "broaden the disclosure of information provisions" in the enabling legislation for the Australian Organ and Tissue Donation and Transplantation Authority (OTA)
However, donor families believe it will have the opposite effect. They argue that the Bill includes a provision that practically restricts them from talking about their experience other than via official campaigns run by the OTA, DonateLife or a related entity.
The provision relates to the publication, dissemination or disclosure by an authorised family member.
The explanatory memorandum says, "This item stipulates that an authorised family member of a deceased organ or tissue donor or recipient may publish, disseminate or disclose information that is likely to enable the identification of the deceased donor or recipient if it is for the purposes of either the OTA’s or a DonateLife Agency’s educational, commemorative, promotional or community activities that are relevant to an organ or tissue donation and transplantation matter."
It adds, "This provision does not allow for the publication, dissemination or disclosure of information for activities beyond the remit of OTA and DonateLife.”
In its submission to the inquiry, the Department of Health and Aged Care (department) said, "The Bill seeks to broaden the disclosure of information provisions in the OTA Act to allow DonateLife agencies, grant recipients 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, without breaching law of a state or territory."
It added, "It does not create any new restrictions on disclosures."
Yet that view is not shared by donor families. They say the change effectively requires them to hand over their experience and that of the donor to the federal government and align their activities to those of the OTA or DonateLife.
Bruce McDowell's daughter passed away and became a tissue donor. In his submission to the inquiry, Mr McDowell says, "Donor Families should be able to freely tell the stories of our loved ones within our community, without the approval of the OTA or a DonateLife agency and without connection to the OTA and DonateLife activities. When I said yes to organ and tissue donation I did not expect to lose control of my loved ones information."
Philippa Delahoy is the secretary of Donor Families Australia. In her submission to the inquiry, she says, "My husband, Scott, became an organ and tissue donor on 21st January 2011; a remarkable legacy that tells you everything you need to know about this beautiful, generous, optimistic, community-minded Australian."
"When I consented to the donation of Scott’s organs and tissue, I did not consent to handing over ownership of Scott’s donation story to DonateLife or the OTA.
"In retrospect, I have serious doubts about whether I would have consented to the donation, if I had known that the Government would attempt to introduce such draconian measures restricting my freedom to share Scott’s story," says Ms Delahoy.
The government's failure to consult them on the change has compounded donor families' anger.
The department acknowledged this absence of consultation in its submission to the inquiry. It said it consulted with the OTA, the Department of the Prime Minister and Cabinet, and the Attorney General’s Department.
The department disputes the donor families' interpretation of the changes. Yet it does acknowledge that protections are conditional on donor families aligning their activities with OTA or DonateLife.
Each state and territory maintain laws that guide and restrict the sharing of information about organ and tissue donors. The Bill being considered by the Senate overrides these restrictions but only where donor families provide their consent to OTA or DonateLife and their separate activities align with those of these agencies.
The Bill does not protect donor families from action by the jurisdictions where they do not provide consent or align their activities.
The department's submission to the inquiry confirms this exclusion. It says, "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."