Understanding parents' views on genetic testing for children in diverse communities
Official title: Exploring parental perspectives on pediatric genome testing, research, and data management in a multicultural population
Funded at Children's Hospital of Los Angeles · NIH-10667281 · Data updated 2026-11-12
This study is looking at how parents from different cultures feel about genetic testing for their kids and how they want to handle their children's private information, so we can make sure these testing practices are fair and respectful for everyone.
Quick facts
| Grant type | R21 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hospital of Los Angeles NIH-funded |
| Lab location | 1 site (Los Angeles, United States) |
| Project start | September 11, 2023 |
| Project end | August 31, 2025 |
| Funding year | 2023 |
| Award (this year) | $470,250 |
| NIH project number | 1R21HG012626-01A1 |
| Project ID | NIH-10667281 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are parents of children who are considering or have undergone genomic testing, particularly those from historically disadvantaged or multicultural backgrounds.
✕Less likely to help
Patients who may not benefit from this research include those without children or those not considering genomic testing.
What this research studies
This research investigates how parents from various cultural backgrounds perceive genomic testing and data privacy for their children. It aims to gather insights through focus groups, interviews, and surveys to understand their preferences regarding data ownership and consent models. The study will explore how parents feel about the control they have over their children's genomic information and the implications of these decisions on their children's health and privacy. By engaging with a diverse population, the research seeks to ensure that genomic testing practices are equitable and respectful of cultural differences.
Why it matters
Potential benefit: If successful, this research could lead to improved genomic testing practices that better respect and protect the privacy and preferences of families from diverse backgrounds.
How similar studies have gone: While there has been some research on genomic testing and privacy, this approach focusing specifically on diverse parental perspectives is relatively novel.
Where this research is happening
-
Children's Hospital of Los Angeles
Los Angeles, United States Active
Researchers
- Principal investigator: Derrington, Sabrina — Children's Hospital of Los Angeles
- Study coordinator: Derrington, Sabrina
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.