Why do some people get sick while others don't? What factors determine a healthy life? How do genetics determine the success of a treatment? A massive 10-year DNA and health study is hoping to answer these questions and more - and it's looking for 1 million people to participate.
The US government is opening enrollment for a ground-breaking 10-year genetics and health study, and they're trying to recruit 1 million participants.
The All of US Research Program is being run by the National Institutes of Health. NIH director Dr. Francis Collins describes it as “A national adventure that is going to transform medical care.”
Whereas most medical studies focus on a small, often homogenous (typically white and of European descent) group of participants, All of US aims to recruit 1 million participants of diverse backgrounds to create a fuller genetic picture.
For those of Irish descent, the study could yield vital information on illnesses the Irish are thought to be genetically predisposed to, such as the blood disorder hemochromatosis, celiac disease, multiple sclerosis, cystic fibrosis, and galactosemia, a metabolic disorder that prevents the breakdown of sugars in dairy, legumes and organ meats.
Whether or not the study can go ahead hinges upon reaching their target goal of participants. Congress has earmarked $1.45 billion in funding for the project, and 25,000 people have already signed up ahead of the open enrollment which begins this weekend.
The project is described as "a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine."
Over the course of 10 years, the 1 million volunteers will be asked to donate their DNA and take the time to complete health surveys and wear fitness and blood pressure trackers to give a holistic understanding of how their genetics, environment, and habits impact on their health.
They will first be set up with the materials and tools necessary to participate, and then, per the AP:
Later this year they’ll start undergoing 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.
Participants data will be kept private and anonymous via a coding system, but individuals will be able to access their own results - a rarity in medical studies - and be allowed to share them with their own doctors. One immediate application of the information they cite is the ability to determine how severe different drug side effects will be for an individual.
Those who have successfully been treated for a serious illness view the study as a way to give back and learn more about what they went through and why.
One participant the AP spoke with, 41-year-old breast cancer survivor Michelle McNeely, said "If they can use my genes and someone’s genes in California and someone’s genes in New York to find some common ground, to help discover some cure — they can use my genes all day long."
To learn more, visit the All of Us website.