Background

African American (AA) live kidney donors (LKDs) have a greater risk than European American live donors of kidney failure. Apolipoprotein 1 (APOL1) gene variants in AAs are associated with the risk of kidney disease.Understanding AA LKDs' attitudes about and willingness to undergo APOL1 genetic testing can inform future LKD informed consent and donation practices.This paper presents preliminary findings from interviews conducted with AA LKDs to assess their attitudes about APOL1 testing.

Methods

AA LKDs who donated at 1 center within the past 10 years were eligible for participate in a semi-structured interview. The interview included 36 open- and closed-ended questions covering: perceptions of APOL1 testing, willingness to get APOL1 tested, hypothetical decisions about donating with 2 APOL1 gene variants, and demographics. Interviews were analyzed by thematic analysis.

Results

To date, five donors completed the interview. Participants were primarily female (n=4), and donated a mean of 5 years ago. No participant was aware of APOL1 testing as an option for AA LKDs. All would have been “a lot” or “entirely” willing to get APOL1 testing before they donated. One LKD said: “Definitely would want to be armed with that information… Maybe I could do something to stay healthy, even if I had the variants.” LKDs commonly reported that a benefit of testing is getting more information to help donors make a better decision to donate. LKDs would be motivated to undergo testing by gaining knowledge that could affect their own and their recipient's future health. LKDs reported that the AA community would view APOL1 testing as positive as it gives individuals more information and may promote a better lifestyle; but cautioned about “how it is presented to the community” so that testing is “marketed correctly in a positive light with the pros and cons.” Donors varied in whether they would have still donated even if they had 2 APOL1 risk variants. Three LKDs would undergo APOL1 testing now after having already donated, but two were unsure based on whether results were actionable. All expressed concerns about insurance discrimination and covering costs of APOL1 testing.

Conclusions

Preliminary findings suggest that AA LKDs support APOL1 testing in the donor evaluation process, and would undergo testing. However, practical concerns remain unresolved about insurance and results being actionable.

CITATION INFORMATION: Gordon E, Johnson C, Wicklund C, Sharp R, Friedewald J. African American Living Kidney Donors' Attitudes About APOL1 Genetic Testing: Implications for Evaluation and Informed Consent. Am J Transplant. 2017;17 (suppl 3).

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