US Wants One Million People to Share Their DNA

The U.S. government is now accepting volunteers for a huge new nationwide health project. The government hopes to find one million people who will share their DNA and 10 years of health patterns.

Researchers hope that by studying such a large group of people, they can learn why some people escape illness and others do not. They also hope to find better ways to prevent and treat diseases.

The National Institutes of Health (NIH) is organizing the project. It is called the All of Us Research Program.

Dr. Francis Collins is director of the NIH. He describes the program as “a national adventure that is going to transform medical care.”

Congress has approved $1.45 billion for the project over the next 10 years. But the money depends on whether enough people around the country will sign up online or through participating health centers.

More than 25,000 people have already received early entry to the project over the past year. The volunteers entered the program by invitation through participating universities and health providers.

Most of today’s medical care is based on short studies of a few hundred or a few thousand patients with specific health conditions.

But the All of Us project involves what is called “precision medicine.” With precision medicine, researchers identify the qualities that make each person different to predict and treat disease. Learning enough to individualize care requires the study of a large number of volunteers.

This includes the healthy and not-so-healthy, the young and old, those living in cities and the country, and people of all racial and ethnic backgrounds.

Currently, volunteers must be at least 18 years old. The study will be open to children next year.

The All of Us project aims to be the largest and most diverse of its kind. Collins said at least half of the participants must be from groups that are traditionally under-represented in medical research.

A person’s genes can increase their risk of getting various diseases. But other factors can increase or reduce genetic risks.

First, volunteers must share electronic health records and blood samples. They must also answer questions about their diet, sleep, environmental exposures and other lifestyle factors. They may also wear devices to monitor their daily health.

Collins said blood samples from volunteers will undergo genetic testing later this year. The tests will look for parts of DNA that affect a person’s risk of disease. Fully mapping the genetic code is too costly for one million people. But that approach will one day be used with some participants.

Collins says one thing he wants to learn from the study is why some people stay healthy despite smoking or pollution or poor nutrition.

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

The All of Us project is not like most medical studies. Participants can choose to see their own test results. They can then share those results with their own doctor before the study reaches any final conclusions. Collins said some information from genetic tests could be useful to doctors in choosing which medicine to give their patients.

The NIH said it has taken as many steps as possible to protect against hackers. The NIH also removes identifying information from volunteers’ medical data and replaces it with a code. Only scientists who meet special security requirements will be permitted to study the data.

The NIH also said federal confidentiality rules do not permit information to be shared with law enforcement.

I’m Jonathan Evans.

Words in This Story

participate/participating – v. to be involved with others in doing something; to take part in an activity or event with others

transform – v. to change something completely and usually in a good way

specific – adj. special or particular

odds – n. the possibility that something will happen; the chance that one thing will happen instead of a different thing

sample – n. a small amount of something that gives you information about the thing it was taken from

monitor – v. to watch, observe, listen to, or check something for a special purpose over a period of time

code – n. a set of letters, numbers, symbols, etc., that identifies or gives information about something or someone

hacker – n. a person who secretly gets access to a computer system in order to get information, cause damage, etc.; a person who hacks into a computer system

confidentiality – n. the quality or state of being private or confidential