Contribuer à une biobanque sur l’autisme : perspectives diverses de participants autistes, de membres de la famille et de chercheurs

Titre original en anglais : Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers

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Lilley, R., Rapaport, H., Poulsen, R., Yudell, M., & Pellicano, E. (2023). Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers. Autism, 28(7), 1719-1731. https://doi.org/10.1177/13623613231203938

Date de publication: 26/10/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
1 / 5 (20,0 %)
  1. Rozanna Lilley
  2. Hannah Rapaport
  3. Rebecca Poulsen *
  4. Michael Yudell
  5. Elizabeth Pellicano

Résumé

Un débat intense a eu lieu au sein des communautés autistes et de l’autisme concernant l’utilisation des biobanques sur l’autisme – des dépôts contenant des matériaux biologiques et phénotypiques – et, plus largement, de la recherche génomique sur l’autisme. Ici, nous avons cherché à comprendre les points de vue et les expériences des personnes contribuant à une biobanque spécifique, l’Australian Autism Biobank. Nous avons adopté une approche multi-informateurs, en menant des entretiens semi-structurés avec 77 personnes, dont 18 proposants autistes, 46 parents et sept frères et sœurs, qui avaient tous donné du matériel à la Biobanque, ainsi que six chercheurs employés dans le cadre du projet. Plus précisément, nous avons demandé : qu’est-ce qui a motivé les participants et les chercheurs à contribuer à l’Australian Autism Biobank ? Et que ressentaient-ils quant à leur implication dans ce processus ? Nous avons analysé les données au moyen d’une analyse thématique réflexive, en adoptant une approche inductive dans un cadre essentialiste. Nous avons identifié trois thèmes, qui ont révélé une grande diversité de points de vue, y compris des conceptualisations positives de l’autisme liées à la neurodiversité et des conceptualisations plus négatives liées à l’espoir du développement du dépistage génétique et du choix reproductif. Ces résultats ont des implications pour la signification, la valeur et les orientations futures de la science de l’autisme. Cette recherche a été menée en utilisant la ressource Australian Autism Biobank. Résumé non technique Beaucoup de recherches sur l’autisme se sont concentrées sur la recherche de gènes susceptibles de causer l’autisme. Pour mener ces études génétiques, les chercheurs ont créé des « biobanques » – des collections d’échantillons biologiques, tels que le sang, la salive, l’urine, les selles et les cheveux, ainsi que d’autres informations sur la santé, telles que des évaluations cognitives et des antécédents médicaux. Notre étude s’est concentrée sur l’Australian Autism Biobank, qui a recueilli des informations biologiques et de santé auprès de près de 1000 enfants autistes australiens et de leurs familles. Nous voulions savoir ce que les personnes pensaient du fait de donner leurs informations à la Biobanque et pourquoi elles avaient choisi de le faire. Nous avons parlé à 71 personnes qui avaient donné à la Biobanque, dont 18 adolescents et jeunes adultes autistes, 46 de leurs parents et sept de leurs frères et sœurs. Nous avons également parlé à six chercheurs qui ont travaillé sur le projet de la Biobanque. Nous avons constaté que les personnes souhaitaient donner leurs informations à la Biobanque afin de pouvoir comprendre pourquoi certaines personnes étaient autistes. Certaines personnes estimaient que le fait de savoir pourquoi pourrait les aider à faire des choix concernant le fait d’avoir des enfants à l’avenir. Les personnes souhaitaient également être impliquées dans la Biobanque parce qu’elles pensaient qu’elle pourrait constituer une ressource susceptible d’aider d’autres personnes à l’avenir. Elles faisaient aussi confiance au fait que les scientifiques protégeraient leurs informations et souhaitaient vivement savoir comment ces informations pourraient être utilisées à l’avenir. Nos résultats montrent que les personnes ont de nombreux points de vue différents sur les biobanques sur l’autisme. Nous suggérons que les chercheurs devraient écouter ces différents points de vue à mesure qu’ils développent leurs travaux.

There has been intense debate within the autistic and autism communities about the use of autism biobanks – repositories containing biological and phenotypic materials – and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource. Lay abstract A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created ‘biobanks’ – collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work.

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 11:30.

Références citées
75
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
8 / 75 (10,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
13 / 310 (4,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 13 / 70 (18,6 %). Auteurices cité·es distinct·es identifié·es comme autistes : 9 / 276 (3,3 %).
Occurrences citées rattachées à la base AutiHub
70 / 310 (22,6 %)
Auteurices cité·es distinct·es rattaché·es : 53 / 276 (19,2 %)
Occurrences rattachées, non identifiées comme autistes
57 / 70 (81,4 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 57 / 310 (18,4 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 44 / 53 (83,0 %).
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