ATC Abstracts

American Transplant Congress abstracts

  • Home
  • Meetings Archive
    • 2022 American Transplant Congress
    • 2021 American Transplant Congress
    • 2020 American Transplant Congress
    • 2019 American Transplant Congress
    • 2018 American Transplant Congress
    • 2017 American Transplant Congress
    • 2016 American Transplant Congress
    • 2015 American Transplant Congress
    • 2013 American Transplant Congress
  • Keyword Index
  • Resources
    • 2021 Resources
    • 2016 Resources
      • 2016 Welcome Letter
      • ATC 2016 Program Planning Committees
      • ASTS Council 2015-2016
      • AST Board of Directors 2015-2016
    • 2015 Resources
      • 2015 Welcome Letter
      • ATC 2015 Program Planning Committees
      • ASTS Council 2014-2015
      • AST Board of Directors 2014-2015
      • 2015 Conference Schedule
  • Search

African American Living Kidney Donors' Attitudes About APOL1 Genetic Testing: Implications for Evaluation and Informed Consent.

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

1Northwestern University, Chicago, IL
2Mayo Clinic, Rocheste

Meeting: 2017 American Transplant Congress

Abstract number: D249

Keywords: African-American, Donation, Genomics, Informed consent

Session Information

Session Name: Poster Session D: Living Donor Kidney Transplant II

Session Type: Poster Session

Date: Tuesday, May 2, 2017

Session Time: 6:00pm-7:00pm

 Presentation Time: 6:00pm-7:00pm

Location: Hall D1

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).

  • Tweet
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print

To cite this abstract in AMA style:

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. [abstract]. Am J Transplant. 2017; 17 (suppl 3). https://atcmeetingabstracts.com/abstract/african-american-living-kidney-donors-attitudes-about-apol1-genetic-testing-implications-for-evaluation-and-informed-consent/. Accessed May 28, 2025.

« Back to 2017 American Transplant Congress

Visit Our Partner Sites

American Transplant Congress (ATC)

Visit the official site for the American Transplant Congress »

American Journal of Transplantation

The official publication for the American Society of Transplantation (AST) and the American Society of Transplant Surgeons (ASTS) »

American Society of Transplantation (AST)

An organization of more than 3000 professionals dedicated to advancing the field of transplantation. »

American Society of Transplant Surgeons (ASTS)

The society represents approximately 1,800 professionals dedicated to excellence in transplantation surgery. »

Copyright © 2013-2025 by American Society of Transplantation and the American Society of Transplant Surgeons. All rights reserved.

Privacy Policy | Terms of Use | Cookie Preferences