‘MSSNG’ Project: Google’s Partnership with Controversial Autism Speaks

Earlier this year Google started working with Autism advocacy group Autism Speaks on a project called Mssng (Pronounced “missing,” to symbolize the missing knowledge surrounding the disorder.) Previously known as The Autism Speaks Ten Thousand Genomes Program (AUT10K,) it is an open source research platform for autism that aims to collect and study the DNA of 10,000 families that have been affected by autism. The goal is to create the world’s largest database of sequenced genomic information of Autism run on Google’s cloud-based genome database, Google Genomics. Though the pair have been working together on this since June of this year, they have recently announced a launch that will allow worldwide access to autism research for scientists.

Over 1,000 genomes have already been sequenced with 2,000 more pending. The results from the first 100 have been published in the American Journal of Human Genetics in July 2013.

On the official press release it was stated, “Once completed, this historic program could lead to uncovering various forms of autisms, like the various forms of cancers today. This in turn could lead to individualized treatments and therapies for those with autism”

This project has already sparked some strong reactions. One blog post by Amy Sequenzia on the Autism Womens Network was titled Is Autism Speaks a Hate Group? From the get go it makes some strong statements. It reads “I know they are hateful. I know they don’t like Autistics. I know they use most of their resources to convince people that the world would be a better place without us, and actually using the money to fund research that can make our extinction possible. Disguised as “research” about babies and siblings, the investments seek to find a genetic marker that will allow parents to terminate an unwanted pregnancy”

This is not the first time concerns were raised against Autism Speaks. A few months ago voices were raised against a partnership between Autism Speaks and Sesame Street. Lei Wiley-Mydske Said, “I am an autistic parent to an autistic child. I grew up watching [Sesame Street], and my son has too. I encourage you to end any partnership with Autism Speaks if you wish to truly celebrate diversity. I would be THRILLED to see autism portrayed on your show, but not when the message is one of despair and fear. Or one that would pretend that disability is shameful. In developing this project, please remember that autism is not something we do to our families, or our communities or anyone else. Autism is how my brain works and interprets the world around me. Our stories deserve to be told with US doing the telling. Not with someone else speaking for us. Again. Please don’t allow a group like Autism Speaks continue to dominate the conversations about autism. They do us harm. You do us harm when you partner with a hate group who wants to prevent people like my son and I from existing and spreads harmful and dehumanizing rhetoric about us.” There is even a ‘Boycott Autism Speaks’ Facebook page.

According to the American Psychological Association website “autism involves impairments in social interaction — such as being aware of other people’s feelings — and verbal and nonverbal communication. Some people with autism have limited interests, strange eating or sleeping behaviors or a tendency to do things to hurt themselves, such as banging their heads or biting their hands.”  The symptoms of people with ASD fall on a continuum, with some individuals showing mild symptoms and others having much more severe symptoms. The spectrum contains subgroups of Asperger’s syndrome, pervasive developmental delay (PDD) and autistic disorder. Autism is said to currently affect one in 68 individuals in the U.S., and one in 42 boys.

The Autism Spectrum Disorder (ASD) has had increasing exposure within the mainstream media over the past few years which give a much broader perspective into the disorder than the hit film “Rainman”. Some examples include the 2009 movie “Adam,” where the lead character of the same name who has Asperger’s, navigates a relationship with a neighbor. There are also two lead characters in the hit TV show “Parenthood” who are on different levels of functionality of the disorder. The best-selling novel turned Broadway show, “The Curious Incident of a Dog in the Nighttime” that features a teenager who is described as having Asperger syndrome/ high-functioning autism. This play is what comedian Jerry Seinfeld attributes for identifying his autistic tendencies. In an interview he said. “I think, on a very drawn-out scale, I think I’m on the spectrum…Basic social engagement is really a struggle. I’m very literal, when people talk to me and they use expressions, sometimes I don’t know what they’re saying. But I don’t see it as dysfunctional, I just think of it as an alternate mindset.”

Autism Speaks, was founded by former vice chairman of General Electric, NBC and NBC Universal, Bob Wright with his wife Suzanne after one of their grandchildren was diagnosed with autism.

Dr. Stephen Scherer, a world-renowned geneticist is the director of MSSNG. He has previously launched the Database of Genomic Variants, the world’s first and most-used database of copy number variants (CNVs). This has enabled numerous medical geneticists and physicians to making hundreds of thousands of medical diagnoses. The hope for MSSNG is to lead to breakthroughs into the causes, subtypes and better diagnosis and treatment for the disorder Autism spectrum disorders (ASD).