Behind a New Autism Initiative: Philanthropy as a Wrangler of Data and People

The Simons Foundation is one of the country’s largest funders of autism research, granting hundreds of millions to date. Its new initiative will amp up the foundation’s role as a hub for research by recruiting 50,000 people to contribute genetic information and otherwise connect with investigators.

The Simons Foundation Autism Research Initiative (SFARI) has long funded investigators and projects on the subject, but it’s also positioned itself as a resource for the broader research community. SFARI is touting its latest move SPARK as the largest autism study in the U.S. to date, partnering with 21 university-affiliated clinics and local nonprofits to pool thousands of families affected by the disorder. Simons brings a big war chest and its considerable reach as a foundation to build a large network and put it to work in the long term.

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Research on autism spectrum disorder faces a number of challenges, and prevalence in the United States has risen substantially to one in 68 children, or possibly higher. That’s in large part because of changes in diagnosis and increased awareness among parents and physicians, but we still know relatively little about the factors that cause it. Research has established that genetics play a big part.

SPARK attempts to build up a stockpile of genetic data from 50,000 individuals with autism, recruiting through partner institutions and collecting DNA in saliva samples. Research needs to establish how symptoms are expressed across a diversity of people from different backgrounds and environments. So researchers need to study huge numbers, and collect data over long periods of time.

That’s why an interesting component of SPARK is that it will establish relationships with thousands of participating families, inviting them to access resources and learn more about their own genetic markers and symptoms, and to take part in future SFARI research projects. SFARI says all qualified researchers will have access to SPARK data, and will be able to recruit for the studies through the program. Additionally, the families involved can even shape research themselves by giving feedback—this is crucial, because each family’s connection to autism and their opinions about it are personal.

This is not the first such broad analysis Simons has undertaken, as SFARI also oversees the Simons Simplex Collection, an open repository of genetic information from 2,600 families affected by autism. SPARK follows a similar approach, but cranked way up.

The program reflects a couple of the Simons Foundation's strengths. For one, it’s indicative of the foundation’s embrace of data and quantitative analysis. A hallmark of this operation is combining various research pursuits with cutting-edge number crunching. We see this in its ocean ecology program, brain science funding, a dedicated Simons Center for Data Analysis, and more.

The other prominent element, here, is philanthropy as a collaborative platform to bring together related work— or in this case, uniting a huge crowd of people toward a common effort. It actually reminds me of another unique, although not as weighty, demonstration of this approach to philanthropy—the time Simons rounded up a bunch of physicists to correct a ton of problematic Wikipedia pages. It’s a small example, but shows the funder's ability to use its huge influence and reach to leverage power in numbers.

If there’s one thing this funder believes in, it’s power in numbers.

See more articles by Tate Williams.