NASHVILLE, Tenn. – Nov. 16, 2022 – Autistic adults have serious concerns about genetic testing for the condition, with nearly half saying it shouldn’t be done at all, according to results of a survey being presented at the National Society of Genetic Counselors (NSGC) 41st Annual Conference.
The findings show autistic adults see potential harms of genetic testing for autism both for the individual being tested, and for the autism community as a whole, meaning autistic people, their family members, researchers and health care providers. Most genetic testing for autism occurs during childhood, with parents or caregivers making the decision.
“The majority of autistic adults participating in our study had reservations about genetic testing for autism in childhood, as well as concerns regarding the possible use of genetic testing for reproductive decision making, in direct opposition of some of the primary benefits of genetic testing cited by parents,” said Loryn Byres, MSc, lead author of the study and a genetic counselor with Provincial Medical Genetics Program at BC Women’s Hospital and Health Centre, Vancouver, British Columbia. “Our findings reflect the known trust issues between the autistic community, health care providers and researchers.”
In the study, researchers distributed a web-based survey through social media platforms to English-speaking autistic adults aged 19 or older, and received 461 responses (24 of respondents reported having had genetic testing). According to the survey results:
- 49% said genetic testing should not be done at all for autism
- 83% said genetic testing for autism could increase discrimination towards autistic people
- 60% said genetic testing for autism made them uncomfortable for ethical, moral or religious reasons
- 41% felt genetic testing was harmful and 23% said it was beneficial for the autistic individual
- 60% said genetic testing was harmful for the greater autism community overall
- 74% said it should only be offered if the autistic person is able to consent
- 26% said genetic testing should be routinely offered to autistic children
Parents often perceive the benefits of genetic testing as enabling earlier treatment and intervention, understanding the cause of autism in their child, and guiding reproductive decision making. The reality is not so clear cut. For certain types of autism (when it co-occurs with intellectual disability or congenital differences), genetic testing may identify other health concerns and guide treatment and management decisions. For isolated autism (not occuring with other conditions), the purpose of genetic testing is less clear, and the response to its benefits varies depending on who you ask.
The researchers noted the majority of survey respondents did not think that a genetic test would either provide them with more certainty about their diagnosis, or increase the educational, medical or social supports that they received. Addtionally, 93% of survey respondents selected identity-first language as their preference, describing themselves as autistic, rather than a person with autism.
“Many autistic people view autism as a difference, not a disability, which is contradictory to the language we often see in health care and family support groups that approach autism as a disease, or something to be cured,” said Byres. “It could be argued that in most cases of autism, in the absence of clear, time-sensitive medical benefits, there may be justification to delay genetic testing until the individual is able to participate in the decision, as suggested by the American Society of Human Genetics and the Amerian Academy of Pediatrics. Genetic counselors are in a unique position to help guide conversations surrounding genetic testing for autism, both with health care providers and parents of autistic children.”
Note to editors: Media interested in viewing study abstracts, interviewing authors and/or attending sessions at the NSGC Annual Conference can contact NSGC’s PR team at 630-344-2009 or NSGCPR@pcipr.com.
About the National Society of Genetic Counselors
NSGC is the leading voice, authority and advocate for the genetic counseling profession. Membership represents more than 5,000 masters-level health professionals, who are committed to ensuring that the public has access to genetic counseling and genetic testing. For more information, visit www.nsgc.org.