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The Autistic Adult’s Perspective on Genetic Testing in the Prenatal and Cancer Settings

August 24, 2023 - January 1, 2024

Current literature fails to address the autistic perspective regarding prenatal and cancer genetic testing. Prenatal genetic testing includes carrier screening, cell-free DNA screening, and diagnostic genetic testing. These tests are recommended to be offered to all pregnant patients. Cancer genetic testing is used to determine if there is a hereditary risk for developing certain cancers. This testing is most frequently offered to those who have a family or personal history of cancer, as well as some who have been recently diagnosed with cancer. Given their strong negative feelings towards genetic testing for autism, autistic individuals may have a unique perspective about prenatal and cancer genetic testing. The more genetic counselors and medical providers are aware and sensitive to the autistic community’s perspectives, the better they can provide care for them.

What are the goals of the study?

I hope to understand the perspectives of the autistic adult on prenatal and cancer genetic testing.

What will happen during the visit or online?

The participants would need to complete the survey which takes about 15-20 minutes.

How will this help families?

This will help provide more perspective from the autism community on genetic testing and help medical providers give the best care.

Eligibility Criteria

Eligibility criteria includes being 18 or older and having a medical or self diagnosis of autism.

View the study flyer

Participate by taking the survey

Contact Information

Robin Urban – uscgtautismsurvey@gmail.com

Research Study Website
Genetic Testing in the Prenatal and Cancer Settings- The Autistic Adult Perspective - University of South Carolina Genetic Counseling

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