What do parents of nonverbal and minimally verbal autistic children think about genomic autism research?
Kathryn Asbury, Umar Toseeb, Naomi Barrow
PMID 38459822WHAT IT FOUND
Parents of nonverbal or minimally verbal autistic children were open to genomic autism research if it supported their children and did not seek a cure.
Many worried about blood samples, trust, and whether prediction would bring useful help.
Key findings
01Parents were generally open to genomic autism research, but wanted clear study aims and no goal of eradication or cure.
02The most common participation concern was blood sampling; parents relaxed when told DNA could be obtained without a blood test.
03Views on polygenic prediction were divided: some saw possible preparation and early support, while around half doubted it would change lives or feared harm.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample was 20 parents, most of them mothers, recruited through voluntary response channels. The children were aged 4 to 11 and mostly in specialist school settings. Only parents were interviewed; the children themselves were not participants. The study reports perceptions and themes, not measured clinical outcomes, so it cannot show whether genomic research or polygenic scores help patients. Participants were selected from volunteers, and the selection was adjusted to cover school years, gender, and data collection methods.
Declared interests
The authors declared no potential conflicts of interest. The research was funded by a grant from the Wellcome Trust via the Centre for Future Health at the University of York.
The easy way to misread this
Do not read these parents' views as evidence that polygenic scores should be used in clinical practice. The study reports opinions from 20 parents, not patient outcomes, and many participants doubted that prediction would lead to useful support.