Making genomic research safer and fairer for communities
Transforming Genomics: Maximizing Community Input and Impact
This project brings community members, clinicians, and experts together to change how genetic data are collected and used so people get fairer benefits and better protections.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Icahn School of Medicine at Mount Sinai NIH-funded |
| Lab location | 1 site (New York, United States) |
| Project ID | NIH-11370506 on NIH RePORTER |
What this research studies
You and other community members will help shape guidelines about how genetic information is gathered, analyzed, and reported. The team will conduct interviews, quantitative surveys, and listening sessions with stakeholders including patients, advocates, clinicians, and researchers to gather diverse views on risks and benefits. A broadly representative stakeholder board and topic-specific workgroups will identify gaps in the literature and define key ethical, legal, and social issues. The project focuses on including populations affected by health disparities so recommendations reflect their needs and concerns.
Who could benefit from this research
Good fit: Ideal participants are community members (especially from historically underrepresented or health-disparity groups), patient advocates, clinicians, and people whose genetic or health data may be used in research.
Not a fit: People looking for new medical treatments or direct clinical therapies are unlikely to benefit directly, since this work focuses on ethics, policy, and community guidance rather than testing interventions.
Why it matters
Potential benefit: If successful, the project could produce guidelines that reduce harms from misuse of genetic data and improve equitable access to benefits from genomic research.
How similar studies have performed: Previous community-engaged ethics and ELSI projects have informed policies and practices, though applying these methods specifically to complex genomic traits and data collection is relatively recent.
Where this research is happening
New York, United States
- Icahn School of Medicine at Mount Sinai — New York, United States (Active)
Researchers
- Principal investigator: Horowitz, Carol R — Icahn School of Medicine at Mount Sinai
- Study coordinator: Horowitz, Carol R
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 below.