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Abstract
Purpose
To investigate the perspectives of Autistic adults regarding genetic testing for autism.
Though previous studies have explored the perceptions of genetic testing for autism
among a variety of different stakeholders, to our knowledge none have explored the
perceptions of Autistic adults.
Methods
We distributed a web-based survey via social media to English-speaking Autistic adults.
The survey assessed individuals’ experiences with, attitudes towards, and interest
in genetic testing for autism, and their perceptions of its potential benefits and
harms.
Results
In total 461 respondents completed the survey: while 27% would have wanted genetic
testing during childhood, 74% felt that it should only be offered if the Autistic
individual is able to consent and 49% felt that genetic testing for autism should
not be done at all. Smaller proportions felt testing should be routinely offered to
Autistic adults and children (35% and 26% respectively). 40% felt that genetic testing
was only harmful, and 15% felt it was only beneficial.
Conclusion
Autistic adults have concerns about genetic testing for autism. Additional work is
required to bridge the divide between the Autistic community and health care providers
and families to identify if and when genetic testing should be offered.
Key words
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Article info
Publication history
Accepted:
January 12,
2023
Received in revised form:
January 12,
2023
Received:
October 18,
2022
Publication stage
In Press Accepted ManuscriptIdentification
Copyright
© 2023 American College of Medical Genetics and Genomics. Published by Elsevier Inc. All rights reserved.
