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

Publication date: 26 Oct 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
5
Publication authors identified as autistic
1 / 5 (20.0%)
  1. Rozanna Lilley
  2. Hannah Rapaport
  3. Rebecca Poulsen *
  4. Michael Yudell
  5. Elizabeth Pellicano

Abstract

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.

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Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
75
Total cited references integrated for this publication.
Cited references with an identified autistic author
8 / 75 (10.7%)
Cited author occurrences identified as autistic
13 / 310 (4.2%)
Among occurrences linked to AutiHub author records: 13 / 70 (18.6%). Distinct cited authors identified as autistic: 9 / 276 (3.3%).
Cited author occurrences linked to AutiHub author records
70 / 310 (22.6%)
Distinct linked cited authors: 53 / 276 (19.2%)
Linked cited-author occurrences not identified as autistic
57 / 70 (81.4%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 57 / 310 (18.4%). Distinct linked cited authors not identified as autistic: 44 / 53 (83.0%).
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