ELSI Friday Forum: What do Researchers Owe the Autistic Community they Study?

Speakers: Monique Botha, PhD, Tara Eicher, PhD

Moderator: Ari Ne’eman, PhD

Abstract: Genomic and other research that impacts the Autistic community has received growing national and international attention in the past few years. While investment in Autism research raises hopes for improved health outcomes in this population, it also raises a host of concerns. Which types of genomic studies promote community benefits? Who defines the benefits of genomic research? What measures should be taken to ensure that data collected from Autistic individuals is not used in ways that cause harm? Exploring cases in the US and the UK, this session will consider the responsibilities of Autism researchers to individuals and the community studied, including promotion of wellbeing, implementation, and best practices for engagement and communication of study results.