Attitudes des adultes autistes à l’égard des tests génétiques pour l’autisme

Titre original en anglais : Attitudes of autistic adults toward genetic testing for autism

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Gallion, T., Williams, Z. J., Niarchou, M., Duncan, L., Hooker, G. W., & Taylor, K. A. (2024). Attitudes of autistic adults toward genetic testing for autism. Journal of Genetic Counseling, 34(1), e1918-e1918. https://doi.org/10.1002/jgc4.1918

Date de publication: 25/05/2024 Ajout dans AutiHub: 07/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
1 / 6 (16,7 %)
  1. Tielle Gallion
  2. Zachary J. Williams *
  3. Maria Niarchou
  1. Laura Duncan
  2. Gillian W. Hooker
  3. Kelly A Taylor

Résumé

Les tests génétiques pour l’autisme constituent un sujet controversé au sein de la communauté autiste. Les opinions concernant les bénéfices, les risques et les limites des tests génétiques diffèrent souvent entre les personnes autistes, les chercheurs et les professionnels de santé. La présente étude visait à comprendre les croyances, les attitudes et les intentions de recourir à des tests génétiques chez des adultes autistes, et à comparer les perspectives des personnes autistes ayant subi des tests génétiques avec celles de personnes n’en ayant pas subi. Un échantillon international de 173 adultes autistes (dont 19 [11 %] avaient précédemment subi des tests génétiques liés à l’autisme) a répondu à une enquête en ligne comprenant des questions évaluant les croyances, les attitudes et les intentions de recourir à des tests génétiques. Les croyances et les attitudes à l’égard des tests génétiques variaient largement au sein de l’échantillon. Les personnes autistes ayant déjà reçu des tests génétiques avaient des croyances beaucoup plus positives à propos des tests génétiques liés à l’autisme (d = 0.87, IC à 95 % [0.37, 1.36]) et des attitudes plus positives à l’égard des tests génétiques (d = 1.14, IC à 95 % [0.66, 1.61]) que celles n’ayant pas reçu de tels tests, bien qu’il n’y ait pas eu de différences significatives entre ces mêmes groupes concernant les croyances à propos des tests génétiques non liés à l’autisme (d = 0.02, IC à 95 % [-0.45, 0.49], p = 0.93). L’intention de se soumettre soi-même ou de soumettre ses enfants (hypothétiques) à des tests génétiques était également prédite de manière significative par les croyances spécifiques à l’autisme, les attitudes et le statut antérieur en matière de tests génétiques. Une large majorité de l’échantillon (78.6 %) était également d’accord pour dire que les personnes autistes bénéficieraient d’un contact avec un conseiller en génétique dans certaines situations. Ces résultats suggèrent que la communauté autiste n’a pas une vision unique des tests génétiques et que, pour les personnes autistes qui souhaitent recourir à des tests génétiques pour elles-mêmes ou pour un membre de leur famille, les conseillers en génétique peuvent jouer un rôle clé dans les soins cliniques.

Genetic testing for autism has been a controversial topic within the autistic community. Opinions regarding the benefits, risks, and limitations of genetic testing often differ between autistic people, researchers, and healthcare providers. The present study sought to understand the beliefs, attitudes, and intentions to pursue genetic testing of autistic adults and compare perspectives of autistic people who have had genetic testing with those who have not. An international sample of 173 autistic adults (19 [11%] who had previously undergone autism-related genetic testing) completed an online survey with questions assessing beliefs, attitudes, and intentions to pursue genetic testing. Beliefs and attitudes about genetic testing varied widely across the sample. Autistic individuals who had received prior genetic testing had much more positive beliefs about autism-related genetic testing (d = 0.87, 95% CI [0.37, 1.36]) and attitudes toward genetic testing (d = 1.14, 95% CI [0.66, 1.61]) compared to those who had not received such testing, although there were no meaningful differences between those same groups regarding beliefs about genetic testing unrelated to autism (d = 0.02, 95% CI [-0.45, 0.49], p = 0.93). Intention to genetically test oneself or one's (hypothetical) children was also significantly predicted by autism-specific beliefs, attitudes, and prior genetic testing status. A large majority of the sample (78.6%) also agreed that autistic individuals would benefit from contact with a genetic counselor in certain situations. These findings suggest that the autistic community does not have a singular view of genetic testing, and for those Autistic individuals who are interested in pursuing genetic testing for themselves or a family member, genetic counselors have the potential to play a key role in clinical care.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:31.

Références citées
70
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
8 / 70 (11,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
11 / 774 (1,4 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 11 / 95 (11,6 %). Auteurices cité·es distinct·es identifié·es comme autistes : 9 / 730 (1,2 %).
Occurrences citées rattachées à la base AutiHub
95 / 774 (12,3 %)
Auteurices cité·es distinct·es rattaché·es : 68 / 730 (9,3 %)
Occurrences rattachées, non identifiées comme autistes
84 / 95 (88,4 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 84 / 774 (10,9 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 59 / 68 (86,8 %).
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