Paper short abstract:

The Australian Autism Biobank includes biological samples & phenotypic data from almost 3,000 participants. This paper analyses interviews with 17 autistic participants, aged 12-22, about what they believe the purpose of the biobank is and how they feel about contributing data to this resource.

Paper long abstract:

Recently there has been a great deal of controversy about the ethics of autism biobanks and, more broadly, of genetic research into this complex neurodevelopmental difference. A key concern is that, despite the rhetoric of neurodiversity, such studies may be used for eugenic purposes. In this paper, we thematically analyse interviews from 17 autistic children and adults, aged 12-22 years, about their participation in the Australian Autism Biobank (AAB). The AAB contains both biological samples and phenotypic data (assessments and questionnaires) from almost 3,000 participants. It is intended as a resource for researchers. The young people we interviewed expressed a range of views about autism causation, the purpose of the biobank and their feelings about contributing data. Most had heard of theories about the relevance of genetics to autism and saw this as an integral part of personhood. A number of these interviewees expressed a love of science and an enjoyment of research participation. While some talked about preventing what they perceived as disabling aspects of autism, others thought that biobanks may help to promote the talents of autistic people through a greater understanding of difference. Listening to the views of these young people, we suggest, is vital to understanding some of the complexities of biobank participation, including the ways in which ideas about the value of different types of research and their potential future applications are negotiated. It also points to autistic young people’s sense of agency in scientific projects and the complexity of their knowledge, genetic and otherwise.