Psychosocial effects of newborn autism genetic risk on families
Official title: Project 2: Psychosocial impact of autism genetic risk information on parents
Funded at Columbia University Health Sciences · NIH-11413754 · Data updated 2026-11-12
This grant tests how telling parents that their newborn has a genetic risk for autism affects their feelings, relationships, and plans over the first two years.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Columbia University Health Sciences NIH-funded |
| Lab location | 1 site (New York, United States) |
| Project start | September 6, 2022 |
| Project end | August 31, 2027 |
| Funding year | 2026 |
| Award (this year) | $163,386 |
| NIH project number | 5P50HD109879-05 |
| Project ID | NIH-11413754 on NIH RePORTER |
Who could benefit from this research
✓Could help
Parents of newborns who have been identified with a genetic risk for autism.
✕Less likely to help
Families not receiving or tracking the genetic information may not experience these specific psychosocial effects.
What this research studies
The project follows families who receive newborn genetic risk information for autism and compares them with families who do not. Researchers will collect surveys soon after the information is given and again 12 months later to track emotional and practical changes. The study aims to understand how this information shapes parents’ expectations, plans, and family dynamics over time.
Why it matters
Potential benefit: Understanding these effects could guide how clinicians communicate genetic risk and support families.
How similar studies have gone: Previous work shows genetic information can influence parental perceptions, with mixed short-term outcomes.
Where this research is happening
-
Columbia University Health Sciences
New York, United States Active
Researchers
- Principal investigator: Appelbaum, Paul Stuart — Columbia University Health Sciences
- Study coordinator: Appelbaum, Paul Stuart
Related research
Other NIH-funded projects on the same topics.
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PEP Talk for Parents: Helping Young Children With Autism Access Early Education and School Services
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-
How learning a newborn's genetic risk for autism affects parents
This project looks at how parents feel, think, and act when they are told their newborn has an increased genetic chance of developing autism.
-
Understanding how genetic risk information for autism affects parents
This study is looking at how parents feel and cope after finding out their newborn has a higher chance of autism, by checking in with them right after they get the news and again a year later to see how their emotions and relationships change over time.
-
Support program for parents of young children diagnosed with autism
This study is testing a new program called Autism Parent Navigators, which offers friendly support to parents of young kids recently diagnosed with autism, helping them find their way through challenges and services to create a better home environment for their children.
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Neural roots of how autistic adults understand word meaning
A study to understand how adults with autism process word meanings in the brain, aiming to improve language support.
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Aiming to understand how sleep problems and daily activity patterns affect brain growth, thinking skills, daily functioning, and autism symptoms in children.
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.