“What is an Ethical Autism Research Culture?” Chloe Silverman (Drexel University, USA)

Egenis seminar series. There is currently little formal guidance for autism researchers seeking to design studies in an ethically conscientious fashion, despite a history of research designs that have incorporated potentially harmful assumptions about the causes and consequences of autism. Published work on autism research ethics has focused primarily on research conduct and responsible communication of findings, with less focus on research design ethics. This persists despite lively conversations and substantive recommendations on this topic from self-advocates, as well as suggestive findings on how research design can be affected by a range of community engagement practices. This talk describes a project still in its early stages that aims to use stakeholder consultation to generate a set of guidelines for ethical autism research design. By comparing the perspectives and publications of researchers who do and do not use forms of community engagement, the project will evaluate whether and how such practices affect research design ethics. One goal of this project is to generate evidence of how community engagement (as one type of ethical research design practice) might benefit both stakeholders and researchers, yielding findings that may be both more innovative and more robust.