Selling Privacy and the Transformative Power of Data

“I don’t love Google having data on my gut bacteria, because they will figure out how to monetize it.”

That was the voice of Kara Swisher interviewing Anne Wojcicki during her keynote on The Future of Genetics. It was a sentiment echoed by many throughout SXSWi 2014.

Everyone at SXSWi seemed to be either talking or selling privacy…because apparently you never know what your acquaintances or colleagues will do with your sent items; From Dana Brunetti lamenting digital script stealing in Hollywood and flogging his solution app Dissipate (“It’s like Snapchat for files”) to Mark Cuban touting his Cyber Dust app as the “Snapchat for texts.” It felt almost as though people were already reacting to Edward Snowden’s call to arms the day before. He accused the NSA of ‘setting fire to the future of the internet,’ and appealed to the Austin crowd to be its firefighters. Either that, or Snapchat’s multi-billion dollar valuation might have had something to do with it.

Privacy is clearly THE hot topic in Silicon Valley at the moment, which creates challenges for people like Wojcicki and her company 23andMe. The company’s success relies upon people paying to hand over their biological data. In return, customers get insights, information and health predictions that are created using their data pool’s correlations.

“Everyone has the right to their genetic information and to use it," claimed Wojcicki during her keynote. She believes that data brings consumer empowerment and feels that the current healthcare system follows a broken model. People wait to get sick and then treat their symptoms, rather than using their genetic data to predict and prevent disease. One of Wojcicki’s most memorable quotes was “obesity is awesome from a Wall Street perspective.” Predictive healthcare is less awesome for the moneymakers because it prevents profit being made on pharmaceuticals. There are all kinds of money to be found in diseases and the treatments they necessitate.

So which is more important? Should we side with the transformative power of knowledge through data? Or be cautious and guard against our entire personal genetic code falling into the wrong hands?

The argument for the former is pretty powerful. 23andme has 650,000 DNA records, making it the largest medical research database in the world. Just as impressive? It only costs you $99 to get access to your own complete data. Wojcicki cited Fructose intolerance as a classic example of a disease that is typically diagnosed after liver or kidney failure. She told the story of a father who used 23andMe to discover he was a fructose intolerance carrier. When he noticed that his 6 year-old son didn’t like ice cream and similar foods, he had him tested too. The results came back showing that his son was also fructose intolerant, his diet was changed, and now he will hopefully never experience liver or kidney failure.

It isn’t just Wojcicki who feels that data could transform global healthcare.  Chelsea Clinton, another of the SXSW keynote speakers, lamented that there was “a massive data gap in development.” She touted the ENAT Messenger System that the Clinton Foundation launched in Ethiopia to help reduce maternal mortality rates.. The system sends heath-care workers SMS reminders of pregnant women’s delivery dates, information for follow-up visits, as well as proactive mobilization of emergency support. Clinton’s examples didn’t stop with humans. She also cited iCow, a service that helps track the fertility cycles of cows, which has proven to improve fertility rates by 200%.

The issue of data and healthcare is being discussed beyond SXSW too. The 22.03 edition of Wired magazine has an interview with Elizabeth Holmes of Theranos (a new blood testing company), which states “with inexpensive and easy access to the information running through their veins, people will have an unprecedented window on their own health. A new generation of diagnostic tests could allow them to head off serious afflictions from cancer to diabetes to heart disease.” Many of Theranos tests cost under $5 and are being rolled out in Walgreens.

I left SXSW feeling inspired by the potential of data to transform people’s lives. The prospect of Google or anyone else monetizing my gut bacteria feels less of an issue if it means that my gut, or someone else’s gut gets to be alive for an extra few years. That is the mind-blowing transformative power of data. We shouldn’t lose sight of it amidst all the paranoia, scaremongering and genuine privacy concerns that currently abound. 


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