Shut Down Unethical Autism Research

The MSSNG, the “world’s largest open-source whole-genome database specific to autism”, was launched in a partnership between Autism Speaks, Google, and the University of Toronto’s SickKids Hospital in 2015.  The most recent iteration of MSSNG, with the DB6 dataset, launched in October 2019, is an open database of the DNA of 5102 autistic people, 6079 allistic (non-autistic) neurodivergent people, and 131 people without any autistic traits.  The stated purpose of the MSSNG database, according to its website, is to “make its data as useful and widely accessible to researchers as possible” and to “promote and enable ‘open science’ research to lead to a better understanding of autism”.

The focus of this database is to make autistic DNA to as many researchers as possible.  To access the database, you need only make an official request query.  There are no questions asked about what the database will be used for.  MSSNG could be thought of not as a pool of data with an intended purpose, but as a reference library where you need to make a request to the librarian and book a time to be allowed inside.

We raise ethical concerns about Google collecting our fingerprints for biometric recognition on our cell phones.  Google is collecting the blood of autistic people for its records, and then disseminating our data to just about any researcher who posts a query.

The worst part is that it is taking blood from people who are not consulted.  In many cases, it is the parents who are volunteering their child’s DNA biometrics on the child’s behalf.  The biometrics are stored on the database in perpetuity; even if the child becomes a self-advocating adult who does not want their personal DNA stored on a Google Cloud, there is no way to rescind the contract.  If you grow up to be an autistic person who does not want to be a science experiment, a science experiment you will remain, because your family signed your data away.

An open database of the genetic material of neurotypical people is nothing short of a cyberpunk, Orwellian nightmare.  It would never be tolerated in a free, democratic society.  Because we all know what such a database is the precursor to: designer babies.

Designer babies are when genetic codes are artificially engineered to promote preferred genetic traits, and genetic traits that are unwanted are discarded.  It is the ultimate weapon for a eugenic future.  Cultures that do not tolerate homosexuality or gender fluidity may use designer baby technology to promote genetics that align with binary gender and heteronormativity, and discard genetics tied to sexual orientations and gender expressions that they deem to be culturally deviant or sinful.  Nations may use designer baby technology to end disabilities tied to genetics in order to alleviate public resources used by the health care system and social services, lower taxes, and make its population more productive.  This would be the end of neurodivergence, as the brain would be artificially crafted to be the most productive and the least deviant from what is considered normal.  Autism would be cured, at the price of humanity’s freedom to be different from the crowd.

What possible use would an open database of genetic samples be used for, other than eugenic research?  What would be the destiny of such a database, free and open for researchers of any ideology to use?

Autism acceptance means that our DNA must be given the same ethical considerations that neurotypical DNA is given.  Autistic medical research samples must be given the same confidentiality and discretion that a neurotypical expects of their X-rays, their CT scans, and blood samples.  We need to know that our DNA will only ever be used to promote our own individual health, and not up for grabs to any curious inquirer. 

Our DNA must never be volunteered by anybody but ourselves.  Any time our DNA could help the field of medicine, a contract must be given to us, written in plain language, and signed by our own hand.

I would like to close with criticism that “autism research” has always been in the locus of medical and genetic research.  Autism research has rarely if ever meant sociological research into how autistic people fit ourselves into our communities, anthropological research into how we meet our basic needs, or social work research into how most effectively to support autistic people in our goals towards self-actualization.  Autism research has normally taken place in test tubes and flasks, and rarely in qualitative interviews with autistic people.  Test tube research promotes nothing but a world without autistic people, and once that’s done, a world without unique people.  Sociological research, and anthropological research, promotes the well-being of autistic people and guides scientific fields into how to help us achieve social equality with neurotypical people.