Donor and Recipient Views on Anonymity Policies in Kidney Donation

In Spain and in the Netherlands, anonymity is maintained for kidney donation from live donors in nondirected (unspecified) and paired exchange (specified indirect) donation. The anonymity is required both prior to and following kidney donation for nondirected and paired exchange proceedings.  In other countries, including the United Kingdom and the United States, there is no requirement of anonymity for those procedures, or the policy is one of conditional anonymity, allowing for donor-recipient pairs to meet after a period of time if both parties agree.

The anonymity policy is based on the rationale that it will protect donors and recipients against potential risks. To date, there is little empirical evidence informing the debate surrounding the issue of anonymity in kidney donation. Dorthe Slaats, MSc, and colleagues conducted an exploratory, multicenter, retrospective, mixed-methods, survey study designed to examine the experiences, preferences, and attitudes of donors and recipients regarding anonymity.

The study included an investigation into differences between donors and recipients who participated in varying transplantation programs such as nondirected transplantations and paired procedures; nondirected donors elected to donate in a strictly anonymous manner, while paired exchange donors originally intended to donate to their known recipient. The study also examined differences in attitudes and experiences between participants from Sweden and the Netherlands, and whether elapsed time from the surgery had an influence on feelings regarding anonymity. Study results were reported in the American Journal of Kidney Diseases [2018;71(1):52-64].

The survey was administered to recipients and donors who received or donated a kidney anonymously (nondirected or paired exchange) at seven Dutch and four Swedish transplantation centers. Inclusion criteria included having donated or received a kidney anonymously in the Netherlands (2009-2014) or Sweden (2004-2014); be ≥18 years of age; have sufficient command of Dutch, Swedish, or English; and reside in the Netherlands or Sweden. The inclusion period was longer in Sweden due to the small number of procedures there.

Of the 743 people who donated or received a kidney anonymously in Sweden or the Netherlands during the study period, 336 donors and 316 recipients received a letter requesting participation in the survey from their transplantation team.  In total, 258 donors and 156 recipients participated.

Participants in the Netherlands could complete the questionnaire either online or on paper; those in Sweden completed the questionnaire on paper. Measured factors included country of residence (Sweden/the Netherlands), type of transplant (nondirected donor/waitlist recipient/paired exchange donor/exchange recipient), and time since surgery in months.

Recalling the donation/transplantation, donors and recipients were satisfied with anonymity when it was maintained prior to surgery (donors, median, 7; recipients, median, 7). Donors and recipients were also satisfied with anonymity after surgery (median 7 for both). There were no differences between donors and recipients in satisfaction with anonymity before or after surgery.

Participants in Sweden were more satisfied with anonymity prior to surgery compared with Dutch participants. In satisfaction with anonymity after surgery, there are no differences between participants in Sweden and in the Netherlands. There was no influence on satisfaction with time since surgery in participants’ satisfaction with anonymity before or after surgery.

More recipients than donors would have liked to have met the other party before (P=.002) and after (P=.006) surgery. Seven percent of donors indicated they would have liked to meet the other party before and 22% after surgery; 15% of recipients would have liked to have met the donor before the surgery and 31% after. Significantly more recipients than donors wanted to meet the other party.

If the other party indicated a willingness to meet, a greater percentage of participants said they would be open for a meeting (donors, 58%; recipients, 60%). There was no relationship between willingness to meet the other party and time since surgery and the other party being willing to meet. There was agreement between donors and recipients on meeting both before and after surgery if both parties agreed.

Donors agreed significantly more with the principle of anonymity both before and after surgery compared with recipients. Both donors and recipients thought it should be permissible to meet before and after surgery if both parties agreed.

When asked about the pros and cons of anonymity, 51% of all participants reported both advantages and disadvantages; 29% reported only advantages; 3% reported only disadvantages; and 17% left the answer blank or responded, “don’t know.” Emotional and relational considerations included self-protection versus curiosity: participants feared that breaking anonymity might damage their image of the anonymous donor or recipient, but there was also a degree of curiosity about the other party and outcomes of the procedure.

Another benefit was seen in anonymity preventing an obligation to enter into a relationship, negating the need to deal with the potentially uncomfortable issue of gratitude, and preventing dealing with varying expectations of the relationship. Conversely, others felt that anonymity created a barrier to the chance to express feelings, share experiences, and gratitude.

Anonymity was seen as a way to ensure fairness of allocations based on medical considerations, leaving the decision making up to physicians. Further, particularly among nondirected donors, anonymity was considered a path to ensuring altruism and unconditionality.

There were some limitations to the study, including the relatively low response rate of recipients that may have limited the generalizability of the findings, and the possibility of recall bias due to the time lag between transplantation and collection of data.

In summary, the researchers said, “Most participants in this study were satisfied with anonymity. However, most participants view an unduly strict policy on anonymity as unnecessary if the donor and recipient want to meet. When considering the anonymity policy, recipients’ and donors’ perspectives should be taken into account. We recommend that anonymity before and after the transplantation should be the norm. However, if all parties independently agree to a nonanonymous procedure, this should be considered. We recommend re-assessing the current policy of absolute anonymity in consideration of these findings. By increasing understanding of the reasons behind the attitudes for and against anonymity, this study may also help to improve education and decision making.”

 Takeaway Points

  1. Researchers explored the experiences, preferences, and attitudes of kidney transplantation donors and recipients toward policies of anonymity among participants in Sweden and the Netherlands.
  2. Most participants were satisfied with their experience of anonymity both before and after transplantation. A minority would have preferred to meet the other party before and after the procedure.
  3. A majority felt that a strict policy of anonymity was unnecessary if both parties wanted to meet.