How learning a newborn's genetic risk for autism affects parents
Project 2: Psychosocial impact of autism genetic risk information on 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.
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 ID | NIH-11176982 on NIH RePORTER |
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.
Who could benefit from this research
Good fit: 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.
Not a fit: Parents of older children, adults with autism, or families who will not receive newborn genetic screening are unlikely to benefit directly from this project.
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 performed: 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
New York, United States
- Columbia University Health Sciences — New York, United States (Active)
Researchers
- Principal investigator: Appelbaum, Paul Stuart — Columbia University Health Sciences
- Study coordinator: Appelbaum, Paul Stuart
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.