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Sunday 17 December 2017

Big Apple dwellers crunch to core of life's data

On the move: A tide of humanity - and potential data - at the Oculus, the new transport hub at the World Trade Centre in New York (AP)
On the move: A tide of humanity - and potential data - at the Oculus, the new transport hub at the World Trade Centre in New York (AP)

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

Researchers will begin recruiting participants from across the city next year for a study so sweeping it is called The Human Project.

It aims to channel different data streams into a river of insight on health, ageing, 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 the autumn for a million-person project intended to foster individualised treatment.

But the 15 million dollars-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 said.

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

They will start with tests of everything from blood to genetics to IQ and will be asked for access to medical, financial and educational records, as well as mobile phone data such as location and the numbers they call and text.

They will also be given wearable activity trackers, special scales, and surveys via smartphone. Follow-up blood and urine tests - and a home faecal sample - will be requested every three years.

Participants will receive 500 dollars a year 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, behaviour 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 will not be able to see any raw data, just anonymised subsets limited to the information they need.

They will take nothing with them but their analyses - by hand, since the analysing computers are not connected to the internet, Dr Glimcher said.

Lee Tien, a senior staff lawyer 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 Dr Glimcher maintains that the researchers could protect it from anything but major terrorism probes.

Dr Glimcher knows The Human Project aspires boldly. In fact, its frequently-asked-questions list includes: "Is this possible? Are you crazy?"

He points to one of medicine's most storied research efforts: The Framingham Heart Study, launched in 1948.

Some 15,000 residents of Framingham, Massachusetts, have been examined over the years and the initiative has fuelled more than 1,200 studies and revealed that blood pressure, cholesterol and smoking were linked to heart disease risk.

"If we could be seen as having contributed to American health care and well-being and education in the United States in the way that Framingham did, but magnified a hundredfold by the tools of today's data, what a fantastic accomplishment that would be," Dr Glimcher said.

Nancy Spinale knows what it takes to be part of an accomplishment like that.

Her parents joined the Framingham study in 1948, she in 1971 and her husband and four children since then.

Now 75 and living on Cape Cod, the retired teacher still undergoes an hours-long follow-up exam and interview every couple of years.

Her loved ones have had some personally useful information from exams and she has the pride of seeing studies come out, with information that could help everyone's health.

"That's the 'wow' feeling," she said.


Press Association

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