Sunday, April 22, 2018
Health

Uncle Sam wants you — or at least your genetic and lifestyle information

WASHINGTON — Government scientists are seeking 1 million volunteers willing to share the innermost secrets of their genes and daily lives as part of an ambitious 10-year research project to understand the causes and cures of disease.

Those selected to be members of the "precision medicine cohort" will be asked to provide a detailed medical history and blood samples so researchers can extract DNA. They will also be asked to report information about themselves — including their age, race, income, education, sexual orientation and gender identity, officials said.

But the project involves much more than statistics and laboratory work.

The government plans to collect information about a person's lifestyle — diet, exercise, smoking, drinking, sleep patterns and other behavior — and the environment in which a person lives, so researchers can identify possible risk factors, including air pollution or high lead levels in drinking water.

Those wishing to participate will be able to sign up by computer or smartphone, and even by using an ordinary telephone to contact a traditional call center. The project, begun as part of President Barack Obama's Precision Medicine Initiative, seeks to develop treatments tailored to the characteristics of individuals.

"Anybody anywhere can raise their hand and say they want to participate," said Kathy L. Hudson, deputy director of the National Institutes of Health, which is leading the effort.

Health care providers, including hospitals and community health centers, will invite their patients to participate. Enrollment is scheduled to begin in November or December, with a goal of signing up 1 million or more people within four years.

The project is being orchestrated by Dr. Francis S. Collins, director of the National Institutes of Health, who in a previous job led the government's successful effort to map the human genome.

Congress in December provided $130 million to the National Institutes of Health for the million-person research cohort. Obama has requested $230 million for the fiscal year that starts Oct. 1, and the appropriations committees in both houses of Congress have approved the request as part of a spending bill for 2017. That bipartisan support strongly suggests that the project will continue after Obama leaves office.

The scale of the project dwarfs most other population-based health research in the United States, such as the Framingham Heart Study, which has produced valuable insights on heart disease by following about 15,500 people enrolled at different times since the late 1940s.

"In the Precision Medicine Initiative," Hudson said, "we hope to follow people for at least a decade. The longer it lasts, the more value it will have."

People can sign up through academic medical centers at Columbia University, Northwestern University in Illinois, the University of Arizona and the University of Pittsburgh.

Participants will be recruited to reflect the geographic, racial, ethnic and socioeconomic diversity of the nation. To help achieve that goal, officials have enlisted community health centers, where more than 90 percent of patients have annual incomes less than twice the poverty level (less than $23,760 for an individual). About a third of health center patients are Latinos, and about one-fourth are African-Americans.

Officials said they wanted patients to be partners in the research, not just "human subjects." To that end, patients will have access to all the information about themselves, including laboratory and genetic test results. Doctors could eventually use the data to shape treatment for an individual patient, rather than using standard treatments that may not work for everyone. Patients will help guide the research, sitting on its steering committee and advisory board.

Officials hope to recruit 150,000 patients from community health centers. Anne Kauffman Nolon, president and chief executive of Hudson River HealthCare, a community health center serving 10 counties of New York, said her patients would need help to overcome several obstacles. The patients, she said, include homeless people, migrant seasonal farm workers, people with low literacy skills and people who have neither computers nor smartphones.

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