Evaluating the family benefits of pediatric genomic sequencing
Official title: An ELSI-Integrated Evaluation of the Family-Level Utility of Pediatric Genomic Sequencing
Funded at Harvard Pilgrim Health Care, INC. · NIH-11066530 · Data updated 2026-11-12
This study looks at how genetic testing for kids with genetic disorders impacts not just the child but their whole family, aiming to understand the benefits and challenges of this testing from the family's point of view to help improve medical practices and policies.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Harvard Pilgrim Health Care, INC. NIH-funded |
| Lab location | 1 site (Canton, UNITED STATES) |
| Project start | March 13, 2023 |
| Project end | February 28, 2026 |
| Funding year | 2025 |
| Award (this year) | $204,000 |
| NIH project number | 5R00HG011491-05 |
| Project ID | NIH-11066530 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are families with children aged 0-21 who are undergoing genomic sequencing for genetic disorders.
✕Less likely to help
Patients without children or those whose genetic conditions do not involve family implications may not benefit from this research.
What this research studies
This research investigates how pediatric genomic sequencing affects not just the individual child but also their family members. It aims to understand the ethical, legal, and social implications of genomic testing in a family context, particularly for children with genetic disorders. By integrating decision science methods, the study will assess the overall utility of genomic sequencing, considering the perspectives and preferences of families. The goal is to provide a comprehensive evaluation that can inform clinical practices and policies in genomic medicine.
Why it matters
Potential benefit: If successful, this research could enhance the understanding of how genomic sequencing can benefit entire families, leading to better health outcomes and informed decision-making.
How similar studies have gone: While there has been research on the individual benefits of genomic sequencing, this approach focusing on family-level utility is relatively novel and untested.
Where this research is happening
-
Harvard Pilgrim Health Care, INC.
Canton, United States Active
Researchers
- Principal investigator: Smith, Hadley Stevens — Harvard Pilgrim Health Care, INC.
- Study coordinator: Smith, Hadley Stevens
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.