Discovering Misattributed Paternity in Living Kidney Donation: Prevalence, Preference, and Practice

Abstract

When evaluating a living kidney donor and recipient with a father-child relationship, it may be discovered that the two are not biologically related. We analyzed data from the United Network for Organ Sharing and the Canadian Organ Replacement Registry to determine how frequently this occurs. We surveyed 102 potential donors, recipients, and transplant professionals for their opinion on whether such information should be disclosed to the donor-recipient pair. We communicated with transplant professionals from 13 Canadian centers on current practices for handling this information. In the United States and Canada, the prevalence of father-child living kidney donor-recipient pairs with less than a one-haplotype human leukocyte antigen match (i.e., misattributed paternity) is between 1% and 3%, or approximately 0.25% to 0.5% of all living kidney donations. Opinions about revealing this information were variable: 23% strongly favored disclosure; whereas, 24% were strongly opposed to it. Current practices are variable; some centers disclose this information, whereas others do not. Discovering misattributed paternity in living donation is uncommon but can occur. Opinions on how to deal with this sensitive information are variable. Discussion among transplant professionals will facilitate best practices and policies. Strategies adopted by some centers can be considered.

Living Kidney Donor Assessment: Challenges, Uncertainties and Controversies Among Transplant Nephrologists and Surgeons

“…Of note, recent data suggest that while the absolute risk of endstage kidney disease (ESKD) within 15 years of donation is low, the incidence of end-stage kidney disease at 15 years may be eight times higher for living kidney donors than for healthy matched controls (35). Given the lack of definitive data, long-term follow-up of donors and comparison to appropriate control populations are needed (6,36,37) including the use of living donor registries (4,22,38 Information disclosure regarding stigmatized conditions and misattributed parentage is an important area of contention, yet few units have clearly enunciated strategies to manage incidentally discovered information (41). To resolve the conflict between protecting the recipient's right to privacy and the donor's right to be informed, some recommended that donors must be advised beforehand that the recipient's health information is protected and their decision to donate should be based on the recipient medical suitability for kidney transplantation (42).…”

“…Similarly, it is argued that transplant physicians do not have a justifiable imperative to disclose misattributed paternity. The potential discovery of nonparentage qualifies as a foreseeable risk and informed consent processes should include an explanation that HLA and ABO testing is done to screen for compatibility only, and that other implications such as possible misattributed parentage will not be disclosed (41,43,44). A recent survey was conducted with potential donors, recipients and health professionals on sharing personal health information in living kidney donation.…”

Informed Consent of Living Kidney Donors: Pitfalls and Best Practice

“…Although content elements are not prescribed, they should at least include description of the evaluation and donor candidacy process, the risk of identification of a health condition that precludes donation, and the risk that this diagnosis may affect insurability (rates and issuance). Additional content elements might include description of the transplant center's procedures in the event of discovery of misattributed paternity, a topic that has long been controversial in the transplant community, so clarification of policy would be helpful to communicate up front [53].…”

Good Ethics Requires Good Science: Why Transplant Programs Should NOT Disclose Misattributed Parentage

“…The pros and cons of disclosing misattributed paternity are complex and have been debated elsewhere (20)(21)(22)(23)(24)(25) …”

“…for an exclusion from fatherhood in international guidelines (17,18 (21). DNP = data not provided (21).…”