‘Human Project’ study will ask 10,000 to share life’s data
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,” says 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, says 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 says.
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’ll also 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 between 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 any 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.