Background

An individual who withdraws from evaluation as a candidate living kidney donor (CD) may be uncomfortable informing the intended recipient (IR). To protect CD autonomy and relationships, the Live Organ Donor Consensus Group states that transplant teams may offer CDs a non-falsified “medical disclaimer” or “medical alibi.” We examined centers’ practices regarding opt-out confidentiality and alibis.

Methods

We asked all US sites that performed >5 living kidney transplants (LKT) from 7/2010- 6/2011 (184) for their donor evaluation informed consent forms. 13 sites were ineligible. Text about opt-out confidentiality and process was independently coded by 2 authors; discrepancies were settled via discussion. Consent checklists were excluded except for the frequency of the right to opt out. Program differences (volume, region) and year of consent revision were assessed with descriptive statistics.

Results

We obtained 131 consent forms and 17 checklists, (87% of eligible sites). 6 sites (4%) declined, 9 (5%) did not reply, and 8 (5%) did not have available forms. Decliners performed fewer LKTs than responders (mean 13 v. 35, p<0.0001); respondent groups were otherwise similar.

Most sites (143, 97%) informed the CD that she had the right to opt out at any time. 90 sites (69%) with consent forms addressed opt-out confidentiality. However, specific assurances about the confidentiality of CD health information (42, 34%), candidacy status (23, 18%), opt-out decision (33, 25%), and opt-out reason (30, 23%) were less common.

Upon CD withdrawal, 57 sites (44%) were willing to intervene with the IR on the CD’s behalf. While most sites required CD authorization or request to do so, 9 (7%) always shared some information with the IR. One-fifth of centers offered CDs a “non-specific” (25, 19.1%) or medical (3, 2.3%) statement of “unsuitability for donation.” Results did not vary by center volume, region, or consent form year.

Conclusions

While most sites state that CDs can opt out any time, CDs would benefit from greater clarity about what information will be shared with the IR after withdrawal. Relatively few centers offer alibis to opted-out donors. In contrast to the consensus group allowance of “medical” alibis, “non-specific” alibis are more common. We support this shift, which eliminates concerns about deception. Further work should explore if increased alibi use would encourage more individuals to undergo living donor evaluation.

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