Autism Genomics Research: Parents’ Views on Genetic Results and Autistic Representation

ELSI Friday Forum • March 11, 2022

Decades of research into the genetics of autism suggest that genes play a significant but also complex role in autism. Studies of the experience of families participating in such studies also report variation, both in their expectations for the research and the impact its results have on them. Panelists will draw on surveys with parents of autistic children who are enrolled in the SPARK 50,000 family cohort study, as well as studies investigating the needs and priorities of autistic people and their families. This panel explores the variety and range of impacts that autism genetics research can have for autism individuals and their families, including impacts on parents’ understanding of causation, responsibility to seek interventions and aspirations for their child’s future as well as how the receipt of a genetic diagnosis does or does not impact the parents’ personal identity. The panel will also consider a range of critiques of genetic research programs, including that they receive disproportionate funding emphasis and don’t fully engage autistic people or reflect their perspectives on benefits and risks.

Panelist: Julia Wynn, MS, CGC (Columbia University)
Panelist: Holly Tabor, PhD (Stanford University)
Moderator: Wendy Chung, MD (Columbia University)

Please see the attached transcript and resources files in the upper right hand corner of this page for more information on this topic, as well as the ELSIhub Collection, "Neurobehavioral Genetic Testing in Children: How Much Should We Know?"