Exploring when to share genetic information from newborns throughout their lives
Identifying strategies to reveal genetic results over the lifespan
['FUNDING_CAREER'] · BRIGHAM AND WOMEN'S HOSPITAL · NIH-10912024
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
| Phase | ['FUNDING_CAREER'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | BRIGHAM AND WOMEN'S HOSPITAL (nih funded) |
| Locations | 1 site (BOSTON, UNITED STATES) |
| Trial ID | NIH-10912024 on ClinicalTrials.gov |
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.
Who could benefit from this research
Good fit: Ideal candidates for this research include newborns and their families, particularly those undergoing genetic screening.
Not a fit: Patients who are not newborns or those who do not undergo genetic screening may not benefit from this research.
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 performed: 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
BOSTON, UNITED STATES
- 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 below.