Exploring ethical issues in precision medicine for cerebral palsy and disability communities
Official title: Investigating Ethical Challenges in Emerging Precision Medicine Research with Disability Communities: The Case of Cerebral Palsy
Funded at Stanford University · NIH-11031730 · Data updated 2026-11-12
This study is looking at how people in the disability community, especially those with cerebral palsy, feel about new personalized treatments and tests, so we can make sure their needs and values are considered as these medical advancements are developed.
Quick facts
| Grant type | Career grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Stanford University NIH-funded |
| Lab location | 1 site (Stanford, United States) |
| Project start | January 1, 2025 |
| Project end | December 31, 2029 |
| Funding year | 2025 |
| Award (this year) | $202,058 |
| NIH project number | 1K01HG013968-01 |
| Project ID | NIH-11031730 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include individuals with cerebral palsy and other disabilities, as well as their caregivers and healthcare providers.
✕Less likely to help
Patients who do not have disabilities or conditions related to cerebral palsy may not receive direct benefits from this research.
What this research studies
This research investigates the ethical challenges and perspectives of disability communities regarding precision medicine, particularly focusing on cerebral palsy. It aims to understand how these communities perceive the potential benefits and harms of emerging treatments and diagnostics. Through semi-structured interviews with researchers, caregivers, and individuals with disabilities, the study seeks to align the values of all stakeholders involved. The goal is to ensure that the development of precision medicine is inclusive and addresses the needs of those affected by disabilities.
Why it matters
Potential benefit: If successful, this research could lead to more ethical and effective precision medicine approaches that better serve individuals with disabilities.
How similar studies have gone: While there is ongoing research in precision medicine, this specific focus on aligning ethical values with disability communities is relatively novel.
Where this research is happening
-
Stanford University
Stanford, United States Active
Researchers
- Principal investigator: Mintz, Kevin Todd — Stanford University
- Study coordinator: Mintz, Kevin Todd
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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.