Abstract: FR-PO0740
Personal Utility and Preferences for Disclosure of Genetic Research Results in the CKiD Study
Session Information
- Pediatric Nephrology: CKD, ESKD, and Glomerular Diseases
November 07, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Pediatric Nephrology
- 1900 Pediatric Nephrology
Authors
- Wong, Craig S., The University of New Mexico Health System, Albuquerque, New Mexico, United States
- Wightman, Aaron G., Seattle Children's Hospital, Seattle, Washington, United States
- Roem, Jennifer, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland, United States
- McKinney, Kara, The University of New Mexico Health System, Albuquerque, New Mexico, United States
- Kogon, Amy, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
- Pruette, Cozumel S., Johns Hopkins University, Baltimore, Maryland, United States
- Furth, Susan L., The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
- Warady, Bradley A., Children's Mercy Kansas City, Kansas City, Missouri, United States
- Wilfond, Benjamin S, Seattle Children's Hospital, Seattle, Washington, United States
Background
Long-standing kidney cohort studies are adapting to changes in policy priorities for genetic research with a shift to results disclosure away from not sharing participant results. To assist policy development in the CKiD Study, we sought to understand the perspectives of young adult (YA) participants in CKiD and CKiD parents on scenarios pertaining to the receipt of genomic research results and their attitudes about how results are disclosed and clinically validated.
Methods
We developed a survey with embedded informational videos and recruited YA participants and parents from the CKiD study. The survey was developed with input from CKiD focus groups, a literature review, and a multidisciplinary expert panel. The survey addressed interest in receiving pathogenic and uncertain genomic research results, validation of results in a clinical setting, and how results should be disclosed. Respondents were asked about their reasons for wanting genetic research results with a validated survey instrument to assess personal utility. Data were analyzed using descriptive statistics, exploratory factor analysis, and univariate logistic regression.
Results
As seen in Table 1, 149 surveys were completed by 58 YAs and 91 parents. Most respondents (90%) would choose to receive pathogenic research results that related directly to kidney disease, and nearly all of them (90%) would despite the need for validation in a clinical laboratory. However, the preference to receive results was lower (48%) if the cost of clinical laboratory validation was not covered by insurance. Responses were similar (Table 1) with respect to the receipt of uncertain genomic results (79% want uncertain results and 87% of those still do despite needing clinical validation) with a similar decrease (50%) if clinical validation was not covered by insurance. Our respondents thought the information had practical benefits and was important for self-knowledge.
Conclusion
CKiD YA participants and parents prefer to receive individual genomic research results, including uncertain results. While most would pursue clinical validation, concerns exist regarding the cost of validation.
Table 1
| Disclosure Preferences | All(149) | YA CKiD(58) | Parents(91) |
| Want Pathogenic Results-Yes | 90%(134) | 92%(53) | 89%(81) |
| Want Uncertain Results - Yes | 79%(118) | 83%(48) | 77%(70) |
Funding
- NIDDK Support