How learning a newborn's genetic risk for autism affects parents
Official title: Project 2: Psychosocial impact of autism genetic risk information on parents
Funded at Columbia University Health Sciences · NIH-11176982 · Data updated 2026-11-12
This project looks at how parents feel, think, and act when they are told their newborn has an increased genetic chance of developing autism.
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 | 2025 |
| Award (this year) | $195,873 |
| NIH project number | 5P50HD109879-04 |
| Project ID | NIH-11176982 on NIH RePORTER |
Who could benefit from this research
✓Could help
Parents of newborns who undergo sequencing-based genetic screening for autism risk, including those whose infants are identified as higher risk and comparison parents whose infants are not flagged.
✕Less likely to help
Parents of older children, adults with autism, or families who will not receive newborn genetic screening are unlikely to benefit directly from this project.
What this research studies
If your newborn is identified as having higher genetic risk for autism, researchers will ask you to complete surveys right after you receive that information and again about a year later. They will compare responses from parents of flagged babies with parents whose babies were not flagged to see differences in emotions, relationships, expectations, and plans. The team will follow families over the first two years of the child’s life and will also ask parents later how a subsequent autism diagnosis changes their view of the early genetic information.
Why it matters
Potential benefit: Findings could guide how newborn genetic risk is communicated and help link families to supportive services to reduce harm and increase helpful follow-up.
How similar studies have gone: Previous studies of parental reactions to genetic risk information in other conditions show mixed emotional and behavioral effects, and applying this approach specifically to newborn autism risk is relatively new.
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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Psychosocial effects of newborn autism genetic risk on families
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.
-
PEP Talk for Parents: Helping Young Children With Autism Access Early Education and School Services
A program helps pediatricians talk with families of very young children with autism to speed up access to early intervention and school-based services.
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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.
-
Sleep and daily rhythms and brain development in autism
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.