Relinquishing Anonymity in Living Donor Kidney Transplantation: Lessons Learned From the UK Policy for Anonymous Donors

Abstract

Anonymous living donor kidney transplantation (LDKT) is performed in many countries and policies on anonymity differ. The UK is the only European country with a conditional policy, allowing pairs to break anonymity post-transplant. There is little evidence on how contact after anonymous LDKT is experienced. In this cross-sectional study participants who donated or received a kidney through non-directed altruistic kidney donation or within the UK living kidney sharing scheme completed a questionnaire on their experiences with and attitudes towards anonymity. Non-parametric statistics were used to analyse the data. 207 recipients and 354 donors participated. Anonymity was relinquished among 11% of recipients and 8% of donors. Non-anonymous participants were generally content with non-anonymity. They reported positive experiences with contact/meeting the other party. Participants who remained anonymous were content with anonymity, however, 38% would have liked to meet post-transplant. If the other party would like to meet, this number increased to 64%. Although participants agreed with anonymity before surgery, they believe that, if desired, a meeting should be allowed after surgery. UK donors and recipients were satisfied with conditional anonymity and experiences with breaking anonymity were positive. These results support the expansion of conditional anonymity to other countries that allow anonymous LDKT.

Anonymity in Kidney Paired Donation: A Systematic Review of Reasons

“…Given the scarce evidence of harm found in donor-recipient interactions, as well as the observed benefits amongst those who did meet, versus concerns for potential harms, findings of our study suggest that the strict anonymity policy should be reconsidered. This echoes the statement by Pronk et al ( 2 ), that “discussion on the risks and benefits of anonymity in anonymous donation, has long been more speculative than evidence-based,” which we found equally applicable to the KPD context.…”

“…Given the scarce evidence of harm found in donor-recipient interactions, as well as the observed benefits amongst those who did meet, versus concerns for potential harms, findings of our study suggest that the strict anonymity policy should be reconsidered. This echoes the statement by Pronk et al (2), that "discussion on the risks and benefits of anonymity in anonymous donation, has long been more speculative than evidence-based," which we found equally applicable to the KPD context. Therefore, we argue that revoking anonymity should be made possible, if all concerned persons made explicit and independent decision to do so, to "preserve the ethical principle and morality of autonomy" of the decision-making individual (30).…”

“…On the other hand, the free-decision approach is already in practice in many countries, where post-operation anonymity may be relinquished if all parties agree, such as the United States, Switzerland and the United Kingdom. In addition, studies in the Netherlands, Sweden and the United Kingdom showed respecting one’s decision to revoke anonymity to be well received by organ donation pairs: participants expressed satisfaction in the decision to remain anonymous, and donation pairs who opted to meet generally reported positive experience from their interaction ( 2 , 18 ).…”

“…In contrast, anonymity is legally mandated before and after the surgery in European countries, such as Netherlands ( 1 ), Spain (Ley 30/1979, art. 4.d) and Sweden ( 2 ).…”