1. Contributing to an Autism Biobank: Diverse Perspectives from Autistic Participants, Family Members and Researchers
- Author
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Rozanna Lilley, Hannah Rapaport, Rebecca Poulsen, Michael Yudell, and 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.
- Published
- 2024
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