DOI: 10.3886/e197009v1
title: Evaluating ApoL1 Genetic Testing Policy Options for Transplant Centers: A Delphi Consensus Panel Project with Stakeholders

description: In many
transplant centers, potential donors are being tested for ApoL1 genetic
variants that are associated with an increased risk of kidney disease. These
variants are primarily seen in people with African ancestry. While this testing
might improve transplant outcomes and living donor safety, it generates
concerns about how we select people for testing and how results are returned,
shared, and used. We conducted a Delphi consensus panel with 27 diverse
stakeholders. The panel recommended that transplant programs ask about African ancestry rather than
race and make testing decisions only after having discussions with donors. They encouraged disclosure of test results to blood relatives and organ recipients but do not recommend requiring disclosure. They also encourage using test results to inform decision-making but never for
unilateral decisions by transplant programs.
description: Response Rates: Twenty-seven panelists participated in the round one survey; 26 panelists attended an orientation webinar, and 1 panelist watched a recording; 26 panelists participated in round 2; 24 attended the deliberation webinar, and 2 participants watched a recording; 26 panelists participated in the round 3 survey.
description: Presence of Common Scales: Round 1 Survey. The panelists were presented with key information about ApoL1 genetic testing, answered 5 knowledge check questions to confirm their understanding of key information, answered brief demographic questions, and read through each of 41 different ApoL1 genetic testing policy options or practices. Panelists were asked to add any important policies or practices they thought were missing that should be considered in the Delphi panel, and to suggest edits to current options.<br><br>Orientation Webinar. After the Round 1 survey, the research team held an hour-longeducational orientation webinar with all panelists during which, the research team presented preliminary data and reiterated the project’s purpose and significance. The orientation webinar gave panelists the opportunity to ask questions and provided panelists with information about what they would be expected to do.<br><br>Round 2 Survey. Panelists were asked to read through 42 different policies related to ApoL1 genetic testing and indicate whether they: 1) support, 2) could live with, or 3) oppose each policy. <br><br>Deliberation Webinar. During the Deliberation Webinar, panelists were presented with the percentage of panelists who supported, could live with, or opposed each of the policy options that did not reach consensus in the Round 2 survey. Panelists were asked to share their views about policy options in light of other panelists’ ratings to inform deliberations and voting for the Round 3 survey. <br><br>Round 3 Survey. Panelists were presented with the percentage of all panelists who supported, could live with, or opposed each of the no-consensus policy options and were asked to consider deliberations from the previous webinar and re-rate these policy options. For two policy options that reached consensus in Round 2 but were revisited, panelists were asked to consider the points raised during the deliberation webinar, rerate both policies, and provide a rationale for their ratings.<br><br><br><br><br>
description: As is typical with Delphi panels, we used criterion-based sampling to identify panelists with relevant expertise and experience who live in the U.S. We intentionally recruited diverse stakeholders who might be viewed as having competing interests with respect to ApoL1 testing policies and practices. We recruited panelists from the APOLLO steering committee and community advisory council, our R01 advisory committee, our professional networks, and participants from our team’s other studies on ApoL1 genetic testing.
description: Of the 27 panelists who participated, 4 were living kidney donors, 3 were deceased donor family members, 5 were recipients of a deceased donor kidney, 5 were recipients of a living donor kidney, 4 were nephrologists, 4 were transplant surgeons, and 4 were genetic counselors. (One panelist received kidney transplants from a deceased donor and later a living donor. They were also a deceased donor family member.).
description: web-based survey; Our Delphi panel process involved two rounds of educational webinars and three rounds of questionnaires administered to panelists with the purpose of converging on agreement about a policy option by a majority of panelists.