'Human Project' study will ask 10,000 to share life's data

Tuesday, June 20, 2017
People walk inside the Oculus, the new transit station at the World Trade Center, in New York. Researchers are gearing up to start recruiting 10,000 New Yorkers early next year for a study so sweeping, it's called "The Human Project."
Frank Franklin II ~ Associated Press

NEW YORK -- Wanted: 10,000 New Yorkers interested in advancing science by sharing a trove of personal information, from cellphone locations and credit-card swipes to blood samples and life-changing events. For 20 years.

Researchers are gearing up to start recruiting participants from across the city next year for a study so sweeping, it's called "The Human Project." It aims to channel different data streams into a river of insight on health, aging, education and many other aspects of human life.

"That's what we're all about: putting the holistic picture together," said project director Dr. Paul Glimcher, a New York University neural science, economics and psychology professor.

There have been other "big data" health studies, and the National Institutes of Health plans to start full-scale recruitment as soon as this fall for a million-person project intended to foster individualized treatment.

But the $15 million-a-year Human Project is breaking ground with the scope of individual data it plans to collect simultaneously, said Dr. Vasant Dhar, editor-in-chief of the journal Big Data, which published a 2015 paper about the project.

"It is very ambitious," the NYU information systems professor said.

Participants will be invited to join; researchers are tapping survey science to create a demographically representative group.

They'll start with tests of everything from blood to genetics to IQ.

They'll be asked for access to medical, financial and educational records, as well as cellphone data such as location and the numbers they call and text.

They also will be given wearable activity trackers, special scales and surveys via smartphone.

Follow-up blood and urine tests -- and an at-home fecal sample -- will be requested every three years.

Participants get $500 per family for enrolling, plus a say in directing some charitable money to community projects.

Researchers hope the results will illuminate the interplay among health, behavior and circumstances, potentially shedding new light on conditions ranging from asthma to Alzheimer's disease.

Their excitement comes with the responsibility of safeguarding the digital savings of a lifetime.

Protections include multiple rounds of encryption and firewalls.

Outside researchers won't be able to see raw data, just anonymized subsets limited to the information they need.

They'll take nothing with them but their analyses -- by hand, since the analyzing computers aren't connected to the internet, Glimcher said.

Lee Tien, a senior staff attorney at the digital-rights group Electronic Frontier Foundation, credits the Human Project researchers with taking security seriously.

But he wonders whether authorities might seek to get at the information for investigations, though Glimcher maintains the researchers could protect it from anything but major terrorism probes.

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