Abstract: FR-PO0060
Co-Creation with Community and Patient Partners: A Process for Return of Genomic Results in the Kidney Precision Medicine Project (KPMP)
Session Information
- ADPKD and Cystic Kidney Disease - 2
October 23, 2026 | Location: Exhibit Hall A, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Genetic Diseases of the Kidneys
- 1201 Genetic Diseases of the Kidneys: Cystic (Monogenic)
Authors
- Young, Bessie A., University of Washington, Seattle, Washington, United States
- Wolf, Susan M., University of Minnesota Medical School, Minneapolis, Minnesota, United States
- Roberts, Glenda V., Mount Sinai Health System, New York, New York, United States
- Berry, Brooke, University of Washington, Seattle, Washington, United States
Group or Team Name
- KPMP
Background
The Kidney Precision Medicine Project (KPMP) is a multi-site, prospective study developed to better evaluate the diagnosis and treatment of chronic kidney disease (CKD) and acute kidney injury (AKI). Participants consented to altruistic kidney biopsies and whole genome sequencing (WGS).
Methods
To develop a participant-centered, equitable, and ethically robust process for genomic return of results (gRoR), KPMP convened a multidisciplinary Working Group (WG) including patient partners (PPs), researchers, clinicians, legal experts, and ethicists. Development of the gRoR framework and materials was informed by the KPMP Community Engagement Committee, which includes PPs, researchers, and research coordinators.
Results
The WG addressed gRoR domains including informed consent, Clinical Laboratory Improvement Amendments (CLIA) confirmation, biospecimen workflows, participant education, and return of results. The ultimate process prioritized participant interests by offering genomic results including American College of Medical Genetics and Genomics (ACMG) recommended actionable genes, kidney-related genes, Apolipoprotein L1 (APOL1) high-risk alleles, and genes related to sickle cell trait and disease. The resulting gRoR process (Fig. 1) also prioritized integration into the electronic health record; participant control over sharing of results; and protections against discrimination.
Conclusion
The final gRoR process incorporates participant choice at multiple decision points, requires CLIA confirmation prior to disclosure, and emphasizes transparent communication and education of participants and researchers. This stakeholder-informed framework provides an ethically grounded and participant-centered approach to genomic results disclosure in nephrology research.
Acknowledgment
Kidney Precesion Medicine Project Community Engagement Committee, Genomic Return of Results (gRoR) Working Group, and all of the KPMP participants.
Funding
- NIDDK Support