Identity Disclosure Between Donor Family Members and Organ Transplant Recipients: A Description and Synthesis of Australian Laws and Guidelines.

Abstract

Introduction: The disclosure of information that identifies deceased organ donors and/or organ transplant recipients by organ donation agencies and transplant centres is regulated in Australia by state and territory legislation, yet a significant number of donor family members and transplant recipients independently establish contact with each other.

Aim: To describe and synthesize Australian laws and guidelines on the disclosure of identifying information.

Method: Legislation and guidelines relevant to organ donation and transplantation were obtained following a search of government and DonateLife network websites. Information about the regulation of identity disclosure was extracted and synthesised using a process guided by Walt and Gilson's (1994) policy analysis framework.

Findings: Nineteen documents were examined. Six guidelines refer to and were consistent with current legislation. Four documents did not address identity disclosure. All jurisdictions prohibit healthcare professionals from disclosing identifying information. In three states, the prohibition extends to all members of the public including donor family members and transplant recipients.

Conclusion: Restrictions on identity disclosure have implications for public promotion of donation and transplantation where sharing of stories and images of organ donors and transplant recipients is common. Further research is required to understand the perspective of donor family members, transplant recipients, and healthcare professionals impacted by the current laws.