Except in Israel and the United States, anonymity is an international norm of deceased donation programs, and all donation agencies have legal and ethical obligations to protect the privacy and confidentiality of donor families and transplant recipients. In Australia and other countries, families and recipients increasingly seek to identify one another and pursue direct contact using social media. This paper reports on the actions taken by the Australian Organ and Tissue Authority to identify practical and ethical issues relating to direct contact which may require changes in policy and practice.Methods
A review of the literature reporting experiences of direct contact between donor families and transplant recipients was conducted. Ethical analysis was performed to identify potential risks and benefits of direct contact, both independently arranged and professionally facilitated. The Authority subsequently held a consultative forum with community stakeholders to explore their experiences and perspectives on the ethical and practical issues related to direct contact, and to discuss potential strategies to address these in the Australian context.Results
The review identified a range of potential benefits and risks of direct contact which were also reflected in opinions expressed by forum participants. Potential benefits include psychological benefits of communicating gratitude in person; sharing information about the donor, recipient and outcomes of transplantation; and finding “closure” or peace. Potential risks include feelings of disappointment or guilt on the part of families or recipients; difficulty managing the relationship when the preferences of each party differ with regards to ongoing contact; and attempted psychosocial or financial exploitation of a family or recipient. While some risks may be mitigated in the context of professionally facilitated contact, the availability of professionally facilitated contact does not mean that independently arranged contact will not occur. The forum provided an opportunity for open communication of stakeholder perspectives on the issue of direct contact and demonstrated the diversity of opinions held by donor families and transplant recipients.Conclusion
Donation agencies must now contend with the issues raised by independently arranged contact between donor families and transplant recipients, while also considering whether to provide the option of professionally facilitated contact where desired. In developing or revising policy or legislation governing privacy and communication between families and recipients, authorities must learn from international experience in this area and also engage closely with a wide range of stakeholders to ensure that any changes are respectful of the diversity of community values and preferences.