An example of such privacy failures is MSSNG, a database of genetic material created by Autism Speaks and Google that currently hosts more than 11,300 whole-genome sequences on a cloud-based system. Most of these large-scale databases fail to meet the privacy standards laid out in UNESCO’s declaration to protect identifiable genetic data, because researchers are getting better at re-identifying certain types of genetic data. Once a database hands over genetic information, the information could rapidly change hands and be used for purposes that are anathema to an Autistic study participant. The aim of curing or eliminating severely disabled people also violates human rights and UNESCO’s 1997 Universal Declaration on the Human Genome and Human Rights.Īutistic people hesitate to share their genetic material because it frequently ends up in large databases that are readily available to qualified researchers at universities, private companies or medical institutions who apply for access. People who work to eliminate severely disabled people under the pretext that they are sparing those people from suffering are misguided. That view ignores a substantial body of research that explores strategies to increase happiness for severely disabled people. Though many genetics researchers don’t want to cure autism, their research can inadvertently benefit scientists who do and who believe that severely disabled autistic people cannot enjoy a good quality of life.

Attempting to cure autism or prevent Autistic people from being born clearly fits this definition. My recommendations aren’t meant to prevent researchers from accessing data instead, they can foster a collaborative relationship between researchers and the Autistic community, resulting in an increase in the availability of genetic data.įrancis Galton, who coined the term eugenics in 1883, described his research as an attempt to improve the “racial qualities of future generations either physically or mentally” through science. I have what I think could be several effective, noncontroversial suggestions that could begin to address the concerns of Autistic people, and in turn increase the likelihood of their participation in genetics research. This intersection of my personal and academic experience enables me to value the goals of Autistic people and scientists at the same time and to work toward a collaborative solution.

Listening to some researchers discuss their visions for the future of autism research often provokes emotions similar to reading about what neo-Nazis want to do with people like me.Īs a researcher, I understand the value of good datasets, and as an Autistic person, I know that genetics research into the health problems that accompany autism is important. I understand why some members of the Autistic community feel this way: I am an Autistic person, and I study white supremacist violence, including eugenics. Still, some Autistic people find it easier to avoid participating in any genetics research rather than trying to avoid projects that may obfuscate their aims with abstract descriptions, lack data security or reshare stored genetic information indiscriminately.

To be sure, Spectrum 10k explicitly states that it is not trying to “cure” or “eradicate” autism. They see that the availability of reliable noninvasive prenatal testing has contributed to the plummeting prevalence of Down syndrome in Europe, which is an example of modern eugenics, and fear that genetics research could lead to similar outcomes for Autistic people. One of their primary concerns is that some geneticists are working to ‘cure’ autism or prevent it via prenatal testing. This derailment exemplifies the growing tensions between genetics researchers and portions of the Autistic community and reflects the fact that some in the community are increasingly hesitant to share their genetic material with researchers. genetics study Spectrum 10k had to pause and reorganize their project after some in the Autistic community questioned the team’s aims and methods. In October, the researchers behind the U.K. Graduate student, Northeastern University

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