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, many in the autistic adult community have expressed concern over the use of fear and pity in Autism Speaks advertising and fundraising tactics. By launching this initiative in partnership with an organization deeply controversial to autistic people and our families, Google has made it difficult for members of the autistic community to trust this new initiative.
- AUT10K raises significant ethical concerns regarding informed consent: While individuals and families may have agreed to allow their genetic information to be utilized for research purposes, AUT10K will make available personal genetic data on a broader scale than ever before. The nature of the platform will allow researchers from academia, the pharmaceutical industry and a wide variety of other backgrounds to utilize the platform without regard for whether the purpose or ethics of their research is in line with the preferences of the donors whose genetic material is being utilized. Furthermore, no recourse has been provided for adults whose genetic material may have been inputed into the system during childhood, but who do not consent to its usage after they reach the age of majority.
- AUT10K has yet to articulate meaningful privacy protections for those whose genetic materials are being utilized: It remains unclear what privacy protections, if any, will prevent donor genetic information from being utilized in a way that would allow personally identifiable information to be garnered by those reviewing it. The online nature of the system and the relatively open access for researchers raises new and concerning privacy and confidentiality concerns that have not been the subject of any meaningful discussion or community engagement.
- AUT10K offers no protections against donor genetic information being utilized for commercial purposes: Genetic information can possess significant commercial implications.As documented in the recent bestseller The Immortal Life of Henrietta Lacks, members of marginalized communities are rarely offered any form of compensation or opportunity to provide meaningful informed consent for the usage of their personal genetic material for broad-based commercial purposes. Given AUT10K’s explicit emphasis on commercialization of genetic information, donors have reason to be concerned that their genetic information will be utilized without notification or consent.