Advertisement
  1. Health

U.S. wants 1 million to share DNA, health habits for science

Published May 1, 2018

WASHINGTON — Wanted: A million people willing to share their DNA and 10 years of health habits, big and small, for science.

On Sunday, the U.S. government will open nationwide enrollment for an ambitious experiment: If they can build a large enough database comparing the genetics, lifestyles and environments of people from all walks of life, researchers hope to learn why some escape illness and others don't, and better customize ways to prevent and treat disease.

"A national adventure that is going to transform medical care," is how Dr. Francis Collins, director of the National Institutes of Health, describes his agency's All of Us Research Program.

Congress has authorized $1.45 billion over 10 years for the project. It all hinges on whether enough people around the country will sign up, either online or through participating health centers.

There's already interest: More than 25,000 people got early entry to the project over the past year through an invitation-only pilot test run by participating universities and health providers.

Most of today's medical care is one-size-fits-all, based on what happened to the average person in short studies of a few hundred or thousand patients with a specific health condition.

And most people who volunteer for those studies are white, leaving questions about the best care for people of different races.

All of Us is part of a move toward "precision medicine," using traits that make us unique to forecast and treat disease. Learning enough to individualize care requires studying a massive number of participants: The healthy and not-so-healthy, young and old, rural and urban, blue-collar and white-collar — and people of all races and ethnicities.

For now, participants must be at least 18. Later, the study will open to children, too.

While there are other big "biobanks" of genetic data from at least 100,000 people, the NIH project aims to be the largest and most diverse of its kind. At least half of the participants must be from groups traditionally under-represented in medical research, Collins stressed.

But genes don't tell the entire story. Sure, what genes you harbor can raise your risk for various diseases. But other factors can increase or reduce some genetic risks.

So first volunteers will share their electronic health records, and answer periodic questionnaires about their diet, sleep, environmental exposures and other lifestyle factors. They might wear fitness trackers and other sensors.

And they'll give a blood sample that later this year will undergo genetic testing, initially to look for so-called "variants" in DNA that affect disease risk, similar to what some private companies now sell, Collins said. Fully mapping the genetic code is too pricey now for a million people, but that more comprehensive approach eventually will be used with some participants, too.

Among the first lessons Collins hopes to learn is about resilience: Why do some people stay healthy despite smoking or pollution or poor nutrition?

"We have no idea how those people escape those odds," he said.

Unlike with most medical studies, participants can choose to see their own test results and share them with their physician long before the study reaches any big-picture conclusions. A caution: There are still many questions about how best to use the results of genetic tests. Still, "we will try to help their doctors sort through what it means," Collins said.

One result that might bring a quick benefit: Genetic variants can signal who is prone to side effects from more than 100 drugs, information that could be used to prescribe a safer drug if only their doctors knew, Collins added.

The effort comes during a time of intense interest in data privacy. The privacy of DNA databases made headlines last week when investigators used a free genealogy website to track down a suspected California serial killer. That's pretty different than the security under which medical DNA must be handled.

NIH said it has taken as many steps as possible to safeguard against would-be hackers. Volunteers' medical data is stripped of identifying information and replaced with a code. Only scientists meeting specific security requirements will be cleared to study the data. NIH also said federal "certificates of confidentiality" prohibit disclosure to law enforcement.

Collins and the project's director, Eric Dishman, noted that Congress expanded protections for federally funded research in the two-year-old 21st Century Cures Act, with an eye on this type of project.

"This is something we thought about," Collins said. "We knew this was going to be an issue in getting people comfortable."

Anyone over the age of 18 who's living in the United States will be able to join the All of Us Research Program, either directly through the JoinAllofUs.org website or through participating health care provider organizations.

Information from the Washington Post was used in this report.

ALSO IN THIS SECTION

  1. FILE  - In this Aug. 28, 2019, file photo, a man exhales while smoking an e-cigarette in Portland, Maine. Walmart says it will stop selling electronic cigarettes at its namesake stores and Sam's Clubs following a string of illnesses and deaths related to vaping.  The nation's largest retailer said Friday, Sept. 20 that it will complete its exit from e-cigarettes after selling through current inventory. It cited growing federal, state and local regulatory complexity regarding vaping products. ROBERT F. BUKATY  |  AP
    The nation’s largest retailer said Friday that it will complete its exit from e-cigarettes after selling through current inventory.
  2. Erik Maltais took an unconventional path to becoming CEO of Immertec, a virtual reality company aimed at training physicians remotely. He dropped out of school as a teenager, served in Iraq in the Marine Corps and eventually found his way to Tampa. OCTAVIO JONES   |   TIMES  |  Times
    Software from Immertec can bring physicians into an operating room thousands of miles away.
  3. Homeowner Cheryl Murdoch, 59, explains the workings of the Philips Smart Mirror in her bathroom. Murdoch and her husband live in the Epperson neighborhood in Wesley Chapel, home of the Crystal Lagoon, where some residents are piloting new health technologies inside their homes. SCOTT KEELER  |   Times
    In Pasco’s Crystal Lagoon community, AdventHealth and Metro Development Group are testing in-home technology aimed at keeping people away from the hospital.
  4. Dr. Paul McRae was the first black chief of staff at Bayfront Medical Center in St. Petersburg. Dr. McRae died on September 13, 2019. He was photographed here in the Tampa Bay Times photo studio for the 2008 Dr. Carter G Woodson Museum's "Legends Honorees" gala. BOYZELL HOSEY  |  BOYZELL HOSEY  |  Times
    ‘His extraordinary example paved the way for so many others.’
  5. Michael Jenkins spent seven days at North Tampa Behavioral Health last July. Since then, he says his three children have been afraid he’ll leave and not come home. JOHN PENDYGRAFT   |   Times
    The patients have no choice, and the hospital is making millions.
  6. Samantha Perez takes a call for someone in need of counseling at the Crisis Center of Tampa Bay earlier this year. The center handles calls dealing with suicide, sexual assault, homelessness and other traumatic situations. They also do outreach and counseling, and operate Transcare, an ambulance service. JONES, OCTAVIO  |  Tampa Bay Times
    Florida’s mental health care system saves lives.
  7. The Florida Department of Health in Hillsborough County identified a positive case of hepatitis A in a food service worker at Hamburger Mary's in Ybor City on Oct. 22, 2018. [JOSH FIALLO | Times] JOSH FIALLO | TIMES  |  JOSH FIALLO | Times
    Slightly more than 200,000 people have been vaccinated this year — a huge jump from the 49,324 people vaccinated in all of 2018.
  8. FILE - In this Feb. 20, 2014, file photo, a patron exhales vapor from an e-cigarette at a store in New York. Under the Trump administration, former FDA commissioner Scott Gottlieb kicked off his tenure in 2017 with the goal of making cigarettes less addictive by drastically cutting nicotine levels. He also rebooted the agency’s effort to ban menthol flavoring in cigarettes. But those efforts have been largely eclipsed by the need to respond to an unexpected explosion in e-cigarette use by teens. AP
    Hundreds of people nationwide have come down with lung illness related to vaping.
  9. This May 2018, photo provided by Joseph Jenkins shows his son, Jay, in the emergency room of the Lexington Medical Center in Lexington, S.C. Jay Jenkins suffered acute respiratory failure and drifted into a coma, according to his medical records, after he says he vaped a product labeled as a smokable form of the cannabis extract CBD. Lab testing commissioned as part of an Associated Press investigation into CBD vapes showed the cartridge that Jenkins says he puffed contained a synthetic marijuana compound blamed for at least 11 deaths in Europe. JOSEPH JENKINS  |  AP
    The vapor that Jenkins inhaled didn’t relax him. After two puffs, he ended up in a coma.
  10. H. Lee Moffitt Cancer Center & Research Institute is the centerpiece of Project Arthur, an 800-acre corporate park that could include up 24 million square feet of office and industrial space on nearly 7,000 acres of what is now ranch land, but targeted for development in central Pasco. Times
    The H. Lee Moffitt facility is the centerpiece of an economic development effort in a proposed 800-acre corporate park.
Advertisement
Advertisement
Advertisement