Bridging autism, science and society: moving toward an ethically informed approach to autism research
Abstract
Recent developments in the science of autism have provoked widespread unease among autism activists. Drawing on the findings of a major international gathering of researchers, ethicists, and activists, this paper presents the first major analysis of the ethical questions arising from this unease. We outline the scientific developments that have provoked the most discomfort, analyze the response to these developments from within and without the autism community, and trace the current state of the ethical debate. Having done so, we contend that these ethical questions are unlikely to be resolved as they depend on fundamentally conflicting assumptions about the nature and desirability of neurocognitive difference. We conclude by arguing for a new range of democratic mechanisms that could enable the scientific community, autistics, and other concerned parties to respond collectively to such entrenched ethical disputes.
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Imposing nonautistic, medically driven priorities has had the grave consequence of diverting resources away from existing autistic people and the areas that matter most in their lives.
“Imposing nonautistic, medically driven priorities has had the grave consequence of diverting resources away from existing autistic people and the areas that matter most in their lives (Pellicano & Stears, 2011; Robertson, 2010).”
From Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (2022) · cites this paper as Pellicano & Stears, 2011
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References 78 · Cited by 227
- Authors
- Pellicano, E., & Stears, M.
- Affiliations
- University of London (GB)
- University of Oxford (GB)
- Corresponding author
- Pellicano, Elizabeth
- ORCID
- Pellicano, Elizabeth
- Venue
- Autism Research
- Publisher
- Wiley
- Published
- 2011-05-12
- Volume
- 4
- Issue
- 4
- Pages
- 271-282
- ISSN
- 1939-3792 (ISSN-L)
- 1939-3806
- OpenAlex
- W2032506266
- Cited by
- 227
- References
- 78
- Citations by year
- 2026: 11 · 2025: 22 · 2024: 32 · 2023: 15 · 2022: 17 · 2021: 27 · 2020: 17 · 2019: 20 · 2018: 15 · 2017: 8 · 2016: 4 · 2015: 10 · 2014: 15 · 2013: 6 · 2012: 7
- FWCI
- 3.03
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Autism Research (publishedVersion)
- PubMed (publishedVersion)
- UWA Profiles and Research Repository (UWA) (submittedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Oxford University Research Archive (ORA) (University of Oxford) (submittedVersion)
- Funders
- University College London
- Chinese Research Academy of Environmental Sciences
- National Institutes of Health
- National Institute of Mental Health
- Topics
- Social Sciences › Safety Research › Disability Rights and Representation
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Life Sciences › Neuroscience › Cognitive Neuroscience › Neuroethics, Human Enhancement, Biomedical Innovations
- Keywords
- autism community, democratic mechanisms, science and society, neurodiversity
- MeSH terms
- Autistic Disorder, Genetic Testing, Humans, Morals, Neurobiology, Neurochemistry, Patient Advocacy, Science, Ethics, Research, Genetic Research
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