When and how to share a child's genetic results over their life
Identifying strategies to reveal genetic results over the lifespan
['FUNDING_OTHER'] · BRIGHAM AND WOMEN'S HOSPITAL · NIH-11397670
Researchers are comparing different ways to share a baby's genetic results with families now and later in life so the information is given when it is most useful.
Quick facts
| Phase | ['FUNDING_OTHER'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | BRIGHAM AND WOMEN'S HOSPITAL (nih funded) |
| Locations | 1 site (BOSTON, UNITED STATES) |
| Trial ID | NIH-11397670 on ClinicalTrials.gov |
What this research studies
If your baby has their genome sequenced, this project compares three ways of returning results: sharing findings only when they become relevant over time, giving childhood-relevant results at birth with adult-onset results offered at 18, or issuing a single report at birth. The team will study practical workflows, ethical concerns, and family preferences using interviews, surveys, and pilot tests. They will examine what it would take to keep a child's genome “on file” for staged disclosure and how that affects autonomy and risks. The goal is to find approaches families find feasible and ethically acceptable.
Who could benefit from this research
Good fit: Ideal participants include parents of newborns, caregivers of children, adolescents transitioning to adulthood, and adults who experienced newborn sequencing.
Not a fit: People without interest in genetic information or those needing immediate diagnostic genetic results for a current medical emergency may not benefit from this project.
Why it matters
Potential benefit: This work could help families receive genetic information at times that maximize benefit and protect a child's future choice about learning adult-onset results.
How similar studies have performed: There have been several newborn sequencing pilots and ethics studies, but the idea of keeping a genome on file for staged disclosure across the lifespan is relatively new and not yet widely 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.