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Current Practice and Ethical Dimensions of Implementing APOL1 Testing into Living Donor Evaluation: A National Survey.

E. Gordon,1 C. Wicklund,1 R. Sharp,2 J. Lee,1 C. Johnson,1 J. Friedewald.1

1Northwestern University, Chicago
2Mayo Clinic, Rocheste

Meeting: 2017 American Transplant Congress

Abstract number: 59

Keywords: African-American, Donation, Ethics, Genomics

Session Information

Session Name: Concurrent Session: Kidney Living Donor Evaluation and Recruitment

Session Type: Concurrent Session

Date: Sunday, April 30, 2017

Session Time: 2:30pm-4:00pm

 Presentation Time: 3:30pm-3:42pm

Location: E450a

Background

African American (AA) live kidney donors (LKDs) have an even greater risk of kidney failure than European American live donors. Apolipoprotein 1 (APOL1) gene variants in AAs are associated with the risk of kidney disease.It is unclear if APOL1 variants further increase live donors' risk of getting kidney failure through a unilateral nephrectomy. We present preliminary findings from a national survey to assess the transplant and nephrology community's current practice and attitudes about APOL1 testing of AA potential LKDs.

Methods

Stratified simple random sampling of physician members of the AST, ASTS, and ASN were surveyed. Roger's Diffusion of Innovations theory informed the 55-item survey covering: current practice and factors affecting use of APOL1 testing, likelihood of and attitudes about using APOL1 testing, demographics, and practice characteristics.

Results

To date, 294 physicians initiated the survey. Participants were primarily male (72%), transplant surgeons (34%), transplant nephrologists (34%), general nephrologists (25%). Most respondents were aware of APOL1 testing as an option for AA LKDs (78%). Most agreed that APOL1 testing is beneficial for AA LKDs (71%), can help LKDs make more informed donation decisions (85%), and the addition of APOL1 testing offers better clinical information about AA LKD's eligibility for donation than existing evaluation approaches (70%). However, few use APOL1 testing routinely (4%) or on a case-by-case basis (14%). Half (55%) would definitely or probably begin or continue using APOL1 testing in the next year, while 23% would definitely or probably not, and 16% did not know. Leading barriers to using APOL1 testing were lack of: professional guidelines (52%), prospective population data (47%), randomized controlled trials (45%). Most believed that APOL1 testing will reduce the number of AA LKDs (69%) or were neutral (25%). Most were neutral or did not know enough about APOL1 testing to know the right clinical scenario to order APOL1 testing (60%). Most would use educational materials to counsel AA LKDs about APOL1 testing (97%).

Conclusions

Preliminary findings suggest that while the transplant and nephrology communities support APOL1 testing, few use it in clinical practice. The idea of integrating APOL1 testing into practice raises ethical tensions given fear that testing will reduce AA LKDs, while also enhancing LKDs' informed decision making.

CITATION INFORMATION: Gordon E, Wicklund C, Sharp R, Lee J, Johnson C, Friedewald J. Current Practice and Ethical Dimensions of Implementing APOL1 Testing into Living Donor Evaluation: A National Survey. Am J Transplant. 2017;17 (suppl 3).

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To cite this abstract in AMA style:

Gordon E, Wicklund C, Sharp R, Lee J, Johnson C, Friedewald J. Current Practice and Ethical Dimensions of Implementing APOL1 Testing into Living Donor Evaluation: A National Survey. [abstract]. Am J Transplant. 2017; 17 (suppl 3). https://atcmeetingabstracts.com/abstract/current-practice-and-ethical-dimensions-of-implementing-apol1-testing-into-living-donor-evaluation-a-national-survey/. Accessed May 25, 2025.

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