Identity disclosure in organ donation: Balancing choice, benefits, and risks

BackgroundDisclosure of information that identifies deceased organ donors and/or organ transplant recipients is prohibited in many countries, including Australia. Anecdotal evidence suggests that some donor family members and transplant recipients desire and independently establish contact using strategies such as social media.ObjectiveTo describe and synthesise the views of Australian donor family members, transplant recipients, and healthcare professionals regarding the disclosure of identifying information between donor family members and transplant recipients.Research designAn exploratory descriptive qualitative study design was used.Participants and research contextSemi-structured interviews were conducted with 23 donor family members, 25 transplant recipients, and 16 healthcare professionals. Interviews were audio recorded and transcribed verbatim. Data were extracted and synthesised using thematic analysis.Ethical considerationsThis study was approved by the Human Research Ethics Committee of Griffith University, Queensland. Participation was voluntary, and informed consent was obtained from all participants.FindingsThree themes were revealed: (i) a desire for choice, (ii) perceptions of benefits, and (iii) perceptions of risks and risk mitigation. Some donor family members and transplant recipients would like the choice to pursue identifiable contact, and for this to be facilitated by donation agencies and transplant units. Many healthcare professionals also support the notion of choice.ConclusionCurrent Australian laws prohibit the disclosure of information identifying deceased organ donors and transplant recipients to each other. Any desire to amend existing laws would necessitate a thorough consultation process and the establishment of suitable systems and processes to support identity disclosure. Further research is needed to ascertain options for identifiable contact and to identify strategies to maximise benefit and minimise harm for donor family members and recipients.