Want to know your child’s risk of autism? For Palo Alto-based Cognoa, the answer is as simple as loading a two-minute video of your young child into an app and filling out a short survey.
According to CEO Brent Vaughan, Cognoa’s technology was developed over five years by Dr. Dennis Wall, a Stanford University pediatrics professor and Harvard University associate professor. The company claims that it has tested its method over 20,000 times across several studies and claims to be able to diagnose autism with 90 percent accuracy.
Hey, it sounds weird, potentially inappropriate, but we live in a world where new mobile technologies are going to turn healthcare on its head.
However, lurking in the Cognoa fine print is an outline of just how drastically wrong things could go with these new tools if they are implemented poorly and with scant regard for privacy.
When a parent loads up a video of their child into the app, if they choose to grant Cognoa permission to store the video for them, according to the Terms of Service the company is granted a “fully paid, royalty-free, perpetual, irrevocable, worldwide, royalty-free, non-exclusive and fully sublicensable right” to use the footage in the future for whatever it pleases.
The videos may be used for internal research, business and product development, or they may be made available to third parties, Cognoa says.
“We may make our Video Content Library available to autism professionals and researchers and other parties for purposes related to development, research, assessment, management and other related issues relevant to our business mission, including the right to license, distribute, reproduce, modify, adapt, publicly perform, and publicly display the Video Content Library.”
Cognoa CEO Brent Vaughan says that the Video Content Library is there to allow willing parents to help further the cause of autism research. “The opt-in will be exceedingly clear,” he says.
But the company has left the door much, much wider open than just this, able to license and distribute its videos (or publicly perform or display them) to “other parties” for “other related issues.” This wording opens it up to using the videos for any commercial purpose. It could theoretically sell the footage to big pharmaceutical companies for use in advertisements and be well within its rights to do so.
And buried in the 18-page document is language that shows off little compassion for confused parents and puts the burden of getting it right squarely on their shoulders.
Parents using Cognoa need to pay attention to privacy from the moment they sign up, for fear of giving Cognoa free reign to use the videos of their children.
“You are solely responsible for applying the appropriate level of access to Your Content. If you do not choose, the system may default to its most permissive setting.”
Once a parent says yes — whether mistakenly or not — to adding a video to the library they can’t get that video out. “Once you provide consent, you cannot revoke it as to any Child Video for which you consented,” the Terms of Service reads, arguing that because Cognoa doesn’t keep identifying information about a caregiver or child in its video library, it is powerless to remove it.
As autism rates skyrocket in the USA — up 30 percent in one year according to the CDC — apps like Cognoa are being welcomed as both a blessing and decried as a curse, encouraging parents to look for for a problem that might not be there.
Cognoa CEO Brent Vaughan dismisses concerns that his company’s product is a symptom of how massively mis- and over-diagnosed autism is in 2014.
“That’s a naive way to think about it,” Vaughan says. With parents waiting over a year on average to diagnose autism, an app like Cognoa is simply a way to make early intervention easier, not to replace diagnosis.
The app is being rolled out in June, but for now people can sign up on Cognoa’s website and use the “freemium” version of it, a 13-question survey that gives you an autism risk score out of 100 for your child.
I answered Cognoa’s test for my two-and-a-half year old nephew, as goofy, whip smart, unpredictable, happy, volatile, annoying, wonderful and normal as a young boy can get. The result? Cognoa sees a high risk of autism.
Cognoa faces a host of thorny issues, around information security, privacy and sensitivity towards anxious parents with a tendency to over-worry. It needs to a transparent tool, not a pawn of industry pushing children toward the clutches of a bloated medical industry and expensive treatment they don’t need.
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