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In response to the recent announcement of the new Google-Autism Speaks collaboration to produce, expand and analyze the world’s largest private collection of DNA samples of autistic children and adults, many in the autistic community have expressed significant concerns regarding the initiative. The program, entitled the Autism Speaks Ten Thousand Genomes Program (AUT10K), will utilize genetic material collected from autistic children and adults as part of the Autism Genetic Resource Exchange (AGRE) for academic and commercial research purposes. A number of critical questions and concerns have emerged regarding the program:
- Autism Speaks Lacks Representation from the Community it Purports to Serve: Autism Speaks is a particularly concerning partner for such an initiative. The organization has long been subject to criticism for its lack of any representation of autistic people on its board of directors or in its senior leadership. Autism Speaks’ research budget has largely ignored research inquiries focused on improving the lives of autistic people alive today, with only 1% of its research budget going towards services issues and 0.25% going towards research on the needs of adults. Furthermore...