Donating Data to a Good Cause
A spotlight on Open Humans, a 2018 Global Sprint participant
In our increasingly-connected world, internet users produce a staggering amount of data — what we click and where we go leaves a long, detailed trail.
Often, that data seeps into the online wilderness, allowing others to watch us, track us, or target us with advertisements. But isn’t it our data? Shouldn’t we have a say in how it’s used?
That’s precisely the mission of Open Humans, a nonprofit platform and community that’s participating in Mozilla’s 2018 Global Sprint.
“Open Humans is a community that empowers people to take control of their own data and put it to the best use they find appropriate,” explains Bastian Greshake Tzovaras, the Berkeley, CA-based director of research at the organization.
Open Humans users create an account and choose which datasets to upload: say, their FitBit activity or AncestryDNA data. One of the most-uploaded datasets is genetic data from 23andMe — some 901 uploads. To date, nearly 2,000 users have uploaded more than 35,000 datasets to Open Humans.
From there, users can share their privately-stored data with the researchers, nonprofits, or citizen scientists they choose to support. For example: If a user spots a study of a chronic illness that affects them or a loved one, they can donate their data, helping to accelerate the research. (Before users donate their data, they can view details how it will be used and managed.)
Among the groups accepting donated data are Keeping Pace, research at NYU that studies human movement patterns, and Circles, research at Harvard Medical School that studies human anatomy.
Open Humans is led by a small team: three full-time staff members and one part-time staff member. The organization is also doling out small grants to support like-minded projects; one grantee is developing statistical techniques for enhancing genetic data. “By making genetic data more powerful, this empowers researchers,” Greshake Tzovaras explains.
By participating in the Global Sprint, Open Humans hopes to expand its community of data-for-good coders, designers, and donors. “The Sprint is a great way to come together and get new contributors,” Greshake Tzovaras says.
Open Humans got its start about three years ago, and its novel concept garnered attention: “Donate Your Health Data to Medical Science,” reported Scientific American in 2015. “New Online Platform Allows You to Open Source Your Body,” wrote Newsweek that same year.
“The idea came out of the Harvard Personal Genome Project,” Greshake Tzovaras explains. “But that project is purely genome based — over time, people realized there was lots of other data that might also be interesting and useful.”
Today, Open Humans is gaining momentum at an auspicious time. It has a close affinity with tenets of the European Union’s General Data Protection Regulation (GDPR), which takes effect May 25 and gives individuals more control over their personal data online.
“We’re closely aligned with the GDPR,” Greshake Tzovaras explained, citing Open Humans’ focus on data portability — that is, being able to take your personal data from one platform and move it somewhere else. “That’s what we are all about.”
Personal data is also making headlines due to the recent Facebook-Cambridge Analytica scandal, which exposed tens of millions of users’ information. At a time when it can seem everyone except individuals has access to personal data, Open Humans is a welcome alternative.
“People connected to the idea of putting their own data in their own hands,” Greshake Tzovaras says.
Learn more about Open Humans. Learn more about the Global Sprint.
