Session Name: Poster Session C: Kidney Living Donor: Selection
Session Type: Poster Session
Date: Saturday, May 30, 2020
Session Time: 3:15pm-4:00pm
Presentation Time: 3:30pm-4:00pm
*Purpose: We sought to assess the perceptions and attitudes about ApoL1 testing in African Americans.
*Methods: African Americans (AA) living in the United States completed an online survey to assess perceptions and attitudes about ApoL1 testing in the context of potential living kidney donation (PLKD). Respondents were given information about kidney disease, transplantation and living donation, genes, and genetic testing. Next, they read vignettes and answered questions pertinent to ApoL1 and PLKD.
*Results: Regarding ApoL1 testing for AAs pursuing PLKD, 45% felt that programs should offer it, 16% thought it should be required, and 39% felt that more research was needed before offering or requiring it. If ApoL1 testing was made available to them as a donor, 56% would be tested, 28% were uncertain, and 16% would not undergo testing. If the respondent underwent ApoL1 testing because it was required by the program, 72% would want to know the results, 14% would not want to know the results, and 15% were not sure they would want to be informed of findings. If ApoL1 testing showed higher lifetime risk of kidney disease, 54% thought the donor and physician should make a shared decision about donation, 22% felt the donation decision should be left to the donor, and 24% felt that the program should not allow donation to proceed. Most (78%) felt that the intended transplant candidate has the right to know the donor’s ApoL1 results. When imagining oneself as a transplant candidate, 47% said they would be more willing to ask other AAs about living donation if ApoL1 testing was part of the donor evaluation process; 23% would be less likely and 30% said availability of ApoL1 testing would not make any difference in whether they ask others to consider living donation. Compared to those ≥35 years old and with higher health literacy, younger adults (<34 years old) and those with lower health literacy were: more likely to state that ApoL1 testing should not be part of the donor evaluation, less likely to take the test as a donor, less likely to say they would want to know the results of ApoL1 testing if such testing was required of them as a donor, and less likely to believe that the transplant candidate has a right to know the donor's ApoL1 results (all P values <0.001).
*Conclusions: The perspectives of AAs in he general public have been largely missing from the discussion about the role of ApoL1 testing in the context of PLKD. These should be considered since they represent the pool of potential living donors and are most affected by decisions made within the transplant community. Views about ApoL1 testing may vary by age and health literacy, which also should be considered as transplant programs decide whether and how to offer ApoL1 testing for AA donors.
To cite this abstract in AMA style:Rodrigue JR, Austrie J, Fleishman A, Tercyak K, Berrigan M, Pavlakis M, Rohan V, Baliga P, Kayler L, Feeley T, Pollak M. Public Perceptions of ApoL1 Testing in the Context of Living Kidney Donation [abstract]. Am J Transplant. 2020; 20 (suppl 3). https://atcmeetingabstracts.com/abstract/public-perceptions-of-apol1-testing-in-the-context-of-living-kidney-donation/. Accessed December 1, 2023.
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