Exploring when to share genetic information from newborns throughout their lives
Official title: Identifying strategies to reveal genetic results over the lifespan
Funded at Brigham and Women's Hospital · NIH-10912024 · Data updated 2026-11-12
This study is looking at the best ways to share genetic information from newborns with their parents and later with the kids themselves, so that it’s helpful and relevant as they grow up, while also making sure it’s done in a respectful and caring way.
Quick facts
| Grant type | Career grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Brigham and Women's Hospital NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project start | September 1, 2023 |
| Project end | August 31, 2025 |
| Funding year | 2024 |
| Award (this year) | $179,820 |
| NIH project number | 5K99HG012809-02 |
| Project ID | NIH-10912024 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include newborns and their families, particularly those undergoing genetic screening.
✕Less likely to help
Patients who are not newborns or those who do not undergo genetic screening may not benefit from this research.
What this research studies
This research investigates the timing and methods for revealing genetic information obtained from newborns as they grow. It considers how to manage and disclose this information to parents and eventually to the individuals themselves, ensuring that it is shared when it is most relevant. The study explores various strategies, including keeping genetic data on file for future use or providing all relevant information at birth. The goal is to find an ethical and practical approach to lifelong genomic medicine that respects the autonomy of the child and balances benefits and risks.
Why it matters
Potential benefit: If successful, this research could lead to improved management of genetic information, enhancing healthcare decisions for individuals throughout their lives.
How similar studies have gone: While the concept of lifelong genomic medicine is emerging, this specific approach to timing and disclosure of genetic information is relatively novel and has not been extensively tested.
Where this research is happening
-
Brigham and Women's Hospital
Boston, United States Active
Researchers
- Principal investigator: Lewis, Anna — Brigham and Women's Hospital
- Study coordinator: Lewis, Anna
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.