Abstract: TH-PO0982
Socioeconomic Disparities in Genetic Testing Awareness Among Individuals with Kidney Diseases
Session Information
- Diversity and Equity in Kidney Health
November 06, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Diversity and Equity in Kidney Health
- 900 Diversity and Equity in Kidney Health
Authors
- Sasson, Adina I, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, United States
- Patel, Radhika, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, United States
- Vorhies, Hanna, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, United States
- Feldman, David L., National Kidney Foundation Inc, New York, New York, United States
- Collins Damron, Kelli, National Kidney Foundation Inc, New York, New York, United States
- Sabatello, Maya, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, United States
- Milo Rasouly, Hila, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, United States
Background
While genetic testing becomes increasingly available to the general population through clinical or Direct-to-Consumer (DTC) genetic testing (GT), the awareness of individuals with kidney disease about GT is unknown. As in other fields, socioeconomic factors may influence GT awareness.
Methods
We conducted a self-administered survey of National Kidney Foundation (NKF) members with self-reported kidney disease. The NKF sent email invitations to its members in November and December 2024. The survey collected demographics, and asked about GT utilization, perceived barriers to clinical GT, and genetic literacy (GeneLiFT). We used R (version 4.2) for all statistical analyses and chi-square tests to assess associations between categorical variables.
Results
A total of 1,168 participants responded to the survey. 83% were over age 50 (n=972), 60% female (n=703), and 73% identified as non-Hispanic White (n=852). Despite 42% (n=492) having family members with kidney diseases and 10% (n=114) having a clinical diagnosis of known genetic disease (e.g., Alport syndrome), only 9% (n=101) had clinical GT for their kidney disease, and 4% (n=48) underwent GT for another reason. In addition, 16% (n=186) considered clinical GT for their kidney disease but did not do it, and of those, 62% (n=116) reported cost and 51% (n=95) access as major reasons against undergoing GT. Regardless of clinical GT, 19.3% (n=226) purchased DTC GT.
Overall, 53.5% (n=625) of participants were unaware of GT (clinical or DTC). Among the 148 participants with a high school diploma or less, 65.5% (n=97) were unaware of GT, compared to 45.8% (n=143) of the 312 with a master’s degree or higher (p=8x10-5). Of the 313 participants with low genetic literacy, 65% (n=214) were unaware of GT, compared to 46% (n=327) of the other 717 who completed GeneLiFT (p=2x10-14). Of the 235 with an area median income (AMI) under $60K, 57% (n=133) were unaware of GT, compared to 45% (n=29) of the 65 with an AMI higher than $150K (p=2x10-3).
Conclusion
Education, income, and genetic literacy are significantly associated with awareness of GT. Among those aware of clinical GT, high cost and lack of access are perceived as barriers to GT for kidney disease. Moving forward, we will compare the beliefs and attitudes toward GT of those who used DTC, clinical GT or none.
Funding
- NIDDK Support