Impact of education on APOL1 testing attitudes among prospective living kidney donors

Abstract

It is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants' desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, "becoming aware of the potential risk of kidney disease among your immediate family" was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was "some transplant centers may not allow you to donate to a loved one". This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.

Evaluating ApoL1 Genetic Testing Policy Options for Transplant Centers

“…Our team's previous work also indicated that increased knowledge of ApoL1 testing in the context of organ donation does affect levels of support for testing, although the effect is variable, with some becoming more supportive and some less supportive after education on ApoL1 testing. 43 For this reason, our project provided education on ApoL1 before our first meeting and then met to discuss issues before the first round of ratings. The discussion was rich because different stakeholder groups brought different kinds of expertise to the table.…”

“…For example, organ recipients might want to know ApoL1 results while living donors and their families might prioritize confidentiality; transplant centers might want to use ApoL1 results to exclude a living donor with two risk alleles while a donor may wish to proceed with donation; genetic counselors may believe they are uniquely qualified to disclose ApoL1 results while transplant physicians may feel competent to share results and may lack adequate access to genetic counseling services. 43 Accordingly, we recruited several panelists for each of seven stakeholder groups: ( 1 ) living kidney donors, ( 2 ) deceased donor family members, ( 3 ) recipients of a deceased donor kidney, ( 4 ) recipients of a living donor kidney, ( 5 ) nephrologists, ( 6 ) transplant surgeons, and ( 7 ) genetic counselors. We recruited panelists from the APOLLO steering committee and CAC, our R01 advisory committee, our professional networks, and participants from our team's other studies on ApoL1 genetic testing.…”

A Practical Guide to Genetic Testing for Kidney Disorders of Unknown Etiology

“…Even though studies indeed report an increased risk of ESKD in donors with the APOL1 high-risk genotype, that is a risk that some living related donors may still wish to take in order to give their loved one a kidney (67). Importantly, attitudes toward genetic testing in potential donors are mixed, with some demonstrating dissatisfaction knowing that genetic testing may preclude them from donating their kidney to a loved one and would be willing to undergo donation despite these potential risks of transplant (68).…”

Implementation of a culturally competentAPOL1genetic testing programme into living donor evaluation: A two-site, non-randomised, pre–post trial design

“…Genetic counselling and shared decision making (SDM) about undergoing APOL1 genetic testing and living donation with APOL1 risk variants are especially warranted given that donating is a preference-sensitive decision and APOL1 poses elevated risks for LDs 35. Transplant physicians are increasingly adopting APOL1 testing,36 37 but they do not consistently inform LD candidates about APOL1 genetic testing, perform genetic counselling or practice SDM with LDs 36–39. This variation results partly from physicians’ lack of practical knowledge and skills in APOL1 counselling, and fear that APOL1 testing will deter LDs from donating, which would further exacerbate African American transplant candidates’ disparities in access to LD kidney transplantation 30 36…”