Understanding how to share genetic findings with participants in large studies
Return of Genomic Results and Estimating Penetrance in Population-Based Cohorts
This study is looking at how to share important genetic information with people who have harmful genetic traits, especially focusing on making sure everyone understands what it means for their health, and it’s particularly aimed at helping those who are often left out of these conversations.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Broad Institute, INC. NIH-funded |
| Lab location | 1 site (Cambridge, United States) |
| Project ID | NIH-10448274 on NIH RePORTER |
What this research studies
This research investigates the processes and implications of returning genetic results to participants in large-scale studies, particularly focusing on individuals with harmful genetic variants. It aims to develop a systematic approach for sharing these findings, ensuring that participants understand their significance and potential health impacts. The study will also assess the medical, behavioral, and economic outcomes of returning these results, especially among underrepresented populations. By analyzing data from the Framingham Heart Study and the Jackson Heart Study, the research seeks to fill critical knowledge gaps in genomic medicine.
Who could benefit from this research
Good fit: Ideal candidates for this research include individuals who have participated in large-scale genomic studies and may carry harmful genetic variants.
Not a fit: Patients who do not have any genetic variants of concern or who have not participated in relevant genomic studies may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could enhance the way genetic information is communicated to patients, leading to better health outcomes and informed decision-making.
How similar studies have performed: Previous research has shown promise in returning genetic results to participants, but this study aims to refine and expand these approaches, particularly for underrepresented groups.
Where this research is happening
Cambridge, United States
- Broad Institute, INC. — Cambridge, United States (Active)
Researchers
- Principal investigator: Green, Robert C. — Broad Institute, INC.
- Study coordinator: Green, Robert C.
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.