Disclosing Health and Health Behavior Information between Living Donors and Their Recipients

Abstract

Background and objectives Living donor guidelines-both national and international-either do not address or are vague about what information can be shared between prospective living donors and transplant candidates, as well as when to make such disclosures and who should make them. This study explored the attitudes of donors and recipients regarding how much information they believe should be shared.Design, setting, participants, & measurements Two Email invitations were sent by the National Kidney Foundation (national headquarters) to its Email listservs, inviting members to participate in an online survey to assess the attitudes of kidney transplant stakeholders regarding the disclosure of health and health risk behavior information.Results From approximately 4200 unique Email addresses, 392 (9.3%) respondents completed part or all of the survey. The analyses were limited to the 236 respondents who self-identified as either donors (potential and actual, n=160) or recipients (candidates and actual, n=76). Overall, 79% (186 of 234) of respondents supported disclosure of general recipient health information that would affect post-transplant outcome to donors, and 88% (207 of 235) supported disclosure of general donor health information to recipients. Recipients and donors were also supportive of sharing donor and recipient information, particularly information relevant to graft and patient survival. There is some reticence, however, about sharing social information. The closer the relationship, the more information they are willing to share. Both donors and recipients wanted the transplant team involved in the information disclosure. Over three quarters of donors (79%) and recipients (78%) did not think the recipient had a right to know why a donor was excluded from donating.Conclusions Both donors and recipients want a significant amount of health information to be disclosed. The opinions of other stakeholders need to be surveyed to determine whether a revision of current policies and practices is warranted.

Attitudes of Lay Stakeholders and Transplant Professionals About Disclosure to Living Kidney Donors in Exchanges and Chains

“…Full methodologies are given in earlier publications that focused on attitudes regarding disclosure in directed donations by NKF donors and recipients (hereinafter referred to as lay stakeholders) and transplant professionals, respectively. 12,15 The 20 overlapping items between the 2 surveys focused on attitudes about disclosing to an exchange/chain donor A information about her or his exchange/chain donor B and exchange/chain recipient B. Eight questions asked about what donor health and health behavior information should be disclosed to donor A about a prospective exchange/chain donor (donor B) who would be donating to donor A's paired recipient (recipient A).…”

“…Full methodologies are given in earlier publications that focused on attitudes regarding disclosure in directed donations by NKF donors and recipients (hereinafter referred to as lay stakeholders) and transplant professionals, respectively. 12,15…”

“…Three previous studies have shown that most donors and recipients believe that information about the recipient’s health that could affect transplant outcome should be shared with the donor. 12 –14 One previous study has shown that health professionals also believe this. 15 However, no study to date has examined disclosure issues in exchanges and chains.…”

Survival in Living Kidney Donors: An Australian and New Zealand Cohort Study Using Data Linkage

“…The donor candidate should also know that it is likely they will be asked for permission to disclose certain personal health information to their intended recipient so that the intended recipient can provide informed consent for the transplant to occur. 69,70 For example, in directed donation, while a donor candidate may wish to keep their act of donor evaluation initially confidential, if the transplant program does not permit anonymous directed donation, or if the intended recipient does not wish to proceed with anonymous directed donation, there may be a need for the donor candidate to provide permission for their identity to be disclosed to the intended recipient so that the intended recipient can make an informed decision about proceeding with the transplant. Similarly, donor candidates and intended recipients need to provide permission to make each other aware whether they are biologically compatible or not.…”

Impact of the OPTN transmissible diseases policy and US PHS increased risk donor guidelines on living donor candidates

“…For example, in our clinical practices, we have disclosed a gay donor candidate's IR status to his husband-recipient. 41,42 In the pre-donation phase, disclosure is a more salient issue with donor candidates who know their intended recipients. Nondirected donors and those who participate in kidney paired donation may have fewer worries, pre-donation, about relational impacts associated with disclosure of risk status.…”