Evidence map›Paper›PMID 38315653›Full record

ArticlePloS one2024

Provider-reported experiences, barriers, and perspectives on genetic testing as part of autism diagnosis.

Amy Wang, India D Little, Dennis Carter, Stephanie Pham, Madeline Piper, Gabriela M Ramírez-Renta, Sydney Telaak, Chris Gunter

Abstract read
In one paragraph

Article in PloS one, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing 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

5 citing papers in PubMed.

  1. Review
  2. Article
  3. Review
  4. Article
  5. Article
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

8 authors.

Amy WangNational Human Genome Research Institute, Social and Behavioral Research Branch, Bethesda, Maryland, United States of America.ORCID 0000-0001-8492-2325
India D LittleNational Human Genome Research Institute, Social and Behavioral Research Branch, Bethesda, Maryland, United States of America.ORCID 0000-0002-2908-8785
Dennis CarterNational Institute of Mental Health, Office of the Clinical Director, Bethesda, Maryland, United States of America.
Stephanie PhamNational Institute of Mental Health, Office of the Clinical Director, Bethesda, Maryland, United States of America.
Madeline PiperJohns Hopkins University and National Institutes of Health, Genetic Counseling Training Program, Baltimore, Maryland, United States of America.
Gabriela M Ramírez-RentaNational Human Genome Research Institute, Social and Behavioral Research Branch, Bethesda, Maryland, United States of America.
Sydney TelaakNational Human Genome Research Institute, Social and Behavioral Research Branch, Bethesda, Maryland, United States of America.
Chris GunterNational Human Genome Research Institute, Social and Behavioral Research Branch, Bethesda, Maryland, United States of America.ORCID 0000-0001-9369-7537

Funding

Genetics and Autism Literacy Survey (GALS)ZIAHG200410 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI GUNTER, CHRISTIE · 2021 to 2025
$2.3M
Intramural NIH HHS ZIA HG200410
6 · The paper itself

Abstract

Several professional organizations recommend conducting genetic testing as part of the autism diagnosis process, as it can provide additional information and benefits for autistic people and their families. However, there is disagreement among autism communities about whether genetic testing reflects autistic people's best interests. In practice, rates of clinical genetic testing for autism are much lower than diagnoses, creating a large gap between clinical guidelines and real clinical encounters. To investigate one potential source of this gap, we interviewed 14 healthcare providers about the autism diagnostic process and their actions related to autism genetic testing. We recruited a sample of primarily Ph.D. level-psychologists and analyzed our qualitative data using a five-step framework analysis method. Participants generally had positive or mixed views of genetic testing in autism. They described their current experiences of implementation of genetic testing, including that they did not often find it changed their clinical practice. Only some providers recommended it to everyone receiving an autism diagnosis. They also listed factors which discourage families from getting testing, including high costs, families feeling overwhelmed, other support needs taking priority, and ethical implications. Notably, providers highlighted a trend of referring patients to research genetic testing rather than clinical testing, which may provide a cheaper and easier alternative but is not likely to return results to participants. Finally, participants felt they needed more training in genetics and listed specific topics of uncertainty. Our research highlights a need to further educate clinicians in the uses and limitations of genetic testing for autism and suggests content areas of focus for genetics educators.

Indexed as

Autistic DisorderGenetic TestingHealth PersonnelHumans

Identifiers

PMID38315653
PMCPMC10843127

What OpenQuestion holds

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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.