Autism Social, Ethical, and Legal Research

Recent scientific discoveries on autism have invoked a discourse of risk. Clinicians may talk about a child’s “risk of developing autism.” Scientists publish research describing environmental and/or genetic “risk factors” for developing autism. Educators speak of a child’s “risk of a poor developmental outcome”. And some members of the public believe that children who receive certain vaccines are “at risk of autism”. The way stakeholders communicate such risk information – especially information that is probabilistic in nature – has enormous implications for autistic people, their families and for public understanding. How should we communicate “risk” information when the causes of autism or its developmental trajectory are not fully understood? And how should we tailor messages of risk to different stakeholders, including autistic individuals, parents, educators and practitioners and the broader public? In the second of a series of SIGs, we will discuss and debate the social, ethical and legal implications of issues surrounding risk communication. Speakers for the session include Simon Baron-Cohen, Professor of Developmental Psychopathology, Autism Research Centre, University of Cambridge; Michael Yudell, Associate Professor and Director, Program in Public Health Ethics and History, Drexel University School of Public Health; Stephen Shore, Assistant Professor of Education, Adelphi University; Holly Tabor, Assistant Professor, Department of Pediatrics, Division of Bioethics, University of Washington School of Medicine; Martine Lappé, Institute for Society and Genetics, University of California, Los Angeles. This year we will work to pair junior and senior scientists interested in ethics and risk communication to work together as professionals and research mentors on these issues. We will also reserve twenty minutes during the session for junior scientists to offer brief presentations on their research in autism ethics and/or risk communication. If you are a junior scientist and are interested in presenting during this SIG, please send an email to myudell@drexel.edu.