Evidence map›Paper›PMID 41604047›Full record

ReviewJournal of community genetics2026

Does genetic testing impact stigma in autism: A scoping review.

Ciara J Molloy, Adam Miles, Claire Christoff, Jessie Cunningham, Jamie Reilly, Jacob Vorstman, Jehannine Austin, Lisa D Hawke, Louise Gallagher

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Journal of community genetics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Ciara J MolloyDepartment of Psychiatry, School of Medicine, Trinity College Dublin, Dublin, Ireland. molloycj@tcd.ie.
Adam MilesThe Peter Gilgan Centre for Research and Learning, SickKids Research Institute, Toronto, ON, Canada.
Claire ChristoffThe Peter Gilgan Centre for Research and Learning, SickKids Research Institute, Toronto, ON, Canada.
Jessie CunninghamHealth Sciences Library, The Hospital for Sick Children (SickKids), Toronto, ON, Canada.
Jamie ReillyTechnology Services Directorate College of Science and Engineering, University of Galway, Galway, Ireland.
Jacob VorstmanThe Peter Gilgan Centre for Research and Learning, SickKids Research Institute, Toronto, ON, Canada.
Jehannine AustinUniversity of British Columbia, Vancouver, BC, Canada.
Lisa D HawkeThe Centre for Addiction and Mental Health, Toronto, ON, Canada.
Louise GallagherDepartment of Psychiatry, School of Medicine, Trinity College Dublin, Dublin, Ireland.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Public stigma is a society’s negative attitude toward a person or groups of people, self-stigma relates to the internalisation of these negative attitudes, and affiliate stigma is experienced by those associated with a stigmatised group. Both autism and genetic testing results can be stigmatised. This scoping review explored relationships between genetic testing and stigma in autism, to understand any perceived positive or negative effects. Embase Classic, and APA PsycINFO via Ovid databases were searched on May 30th, 2023, and updated January 9th, 2025. Included articles related to experiences of or attitudes toward genetic testing or genetic counselling, and involved autistic people, people with autism-related genetic conditions, or their parents, and explored stigma and stigma-related factors. Twenty-five articles were included: three included autistic adults and twenty-two included parents of autistic people or those with autism-related genetic conditions. Stigma-related factors included both autistic people’s and parent concerns surrounding social and insurance discrimination, parental experiences of isolation and ignorance in relation to the healthcare system, and perceptions of labelling. Findings were mixed regarding self-blame, worry and stress among autistic adults. Some parents reported an increase in worry and stress relating to discrimination, while others reported relief related to genetic test results and enhanced biological understanding. This review highlights the lack of focus on perspectives of autistic adolescents and individuals with autism-related genetic conditions, regarding genetic testing impacts on stigma. Future research should address these gaps to inform more supportive clinical and societal practices.

Indexed as

Affiliate stigmaAutismGenetic testingPublic stigmaSelf-stigma

Identifiers

PMID41604047
PMCPMC12852527

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.