Co-producing an ethics framework for participatory autism research: process, principles, and implications

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Bianco, T. D., Holt, R., Violland, P., Douglas, S., Puts, N. A., Plas, J., Terčon, J., Eaton, E., Middlecamp-Sommer, A., Murphy, D., Baron-Cohen, S., Jones, E. J., Loth, E., & Doherty, M. (2026). Co-producing an ethics framework for participatory autism research: process, principles, and implications [Preprint]. Center for Open Science. https://doi.org/10.31234/osf.io/3mpf7_v1

Publication date: 10 Apr 2026 Added to AutiHub: 5 Jul 2026 Type: Preprint Article language: English
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Authors

Publication authors
14
Publication authors identified as autistic
1 / 14 (7.1%)
  1. Teresa Del Bianco
  2. Rosemary Holt
  3. Pierre Violland
  4. Sarah Douglas
  5. Nicolaas A.J. Puts
  1. J Plas
  2. Jerneja Terčon
  3. Eliza Eaton
  4. Angela Middlecamp-Sommer
  5. Declan Murphy
  1. Simon Baron-Cohen
  2. Emily J.H. Jones
  3. Eva Loth
  4. Mary Doherty *

Abstract

Participatory approaches in autism research are gaining ground, with significant structural and epistemological change. However, ethical guidance still focuses on procedural compliance, often remaining separate from societal impacts that are prioritised by participatory research. This paper reports on the co-production of an Autism Research Ethics Charter undertaken by a Working Group comprising autistic and non-autistic researchers and community members within the AIMS-2-TRIALS research consortium.Iterative discussions with participants highlighted challenges arising from implicit frameworks, and the need for relational accountability beside conventional top-down oversight. As a result, we articulated 8 principles, Participation, Accountability, Respect, Transparency, Non-maleficence, Ethics, Research Freedom, and Safeguard Inclusion, addressing systemic barriers in autism research, such as the long-term consequences of outputs, and the position of researchers and community members whose identities intersect.Overall, the PARTNERS Charter reframes ethical responsibility as shared and anticipatory, encompassing complementary roles for researchers, communities, and institutions. As a structured framework, it provides a framework to rethink ethics as relational, embed participatory and ethically responsive practices into research practice.

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