Data for: Identifying and Exploring Solutions to the Ethical Challenges of ApoL1 Testing of Donors with Recent African Ancestry Through Mixed Methods Research with Stakeholders

<h3>Project Overview</h3>
<p>Blacks in the United States have a higher incidence of end-stage kidney disease
than the general population; much, but not all, of this excess risk is attributed to variants in the
ApoL1 gene. Individuals with 2 high-risk variants—found almost exclusively in people of West
African ancestry—have a 20% chance of developing kidney disease. Black living donors (LD)
have a higher risk of developing end-stage kidney disease after donation, and kidney
transplants from Black deceased donors (DD) have diminished allograft survival compared to
kidneys from non-Black donors. The ApoL1 Long-term Kidney Transplantation Outcomes
(APOLLO) Network was established to address the role of ApoL1 testing in kidney
transplantation.</p>
<p>Our project, which was an APOLLO Network ancillary study, had three specific
aims:
<ul>
<li>AIM 1. Assess the acceptability of competing ApoL1 genetic testing practices related to
organ donation through a survey of living kidney donors, kidney donor recipients, and
transplant professionals.</li>
<li>AIM 2: Conduct semi-structured qualitative interviews with people
who were evaluated for living kidney donation and received APOL1 genetic testing to
understand their experiences with and attitudes toward APOL1 genetic testing.</li>
<li>AIM 3: Use a Delphi panel process to obtain an informed consensus among diverse stakeholder groups on ApoL1 testing clinical practices.</li>
</ul>
<h3>Shared Data and Organization</h3>
<p>The data shared here are the survey responses from Aim 1 and the de-identified transcripts from Aim 2, with all accompanying documentation.
The de-identified data from Aim 3 (Delphi panel) is shared in a related data project whose full citation can be found in the project-level metadata.</p>