Study seeks 10K New York­ers to share data

‘Hu­man Project’

Arab Times - - INTERNATIONAL -

NEW YORK, June 19, (AP): 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 lifechang­ing 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, ed­i­torin-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.

Glim­cher

Hope

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.

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 that the re­searchers could pro­tect it from any­thing but ma­jor ter­ror­ism probes.

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. The ini­tia­tive has fu­eled more than 1,200 stud­ies and re­vealed that blood pres­sure, choles­terol and smok­ing were linked to heart dis­ease risk.

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