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How Genes, Habits and Health Data Could Shape the Future of Health Care
A large, federal database is combining genetic information and clinical data to help develop and deliver better treatments for common diseases
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Key takeaways
- The federal All of Us database uses genetic, lifestyle and environmental data to research how to deliver more tailored medical care, with studies already underway.
- About 62 percent of project participants are over the age of 50, adding insight into age-related diseases.
- Anyone can participate free of charge, and there are multiple options for sharing data.
Imagine going to your doctor’s office and finding out you have a specific disease, but instead of being put on a treatment that has worked well for most people, your doctor prescribes a medicine they know will work better for you, based on your background.
That’s the goal of All of Us, a large federal database with information from more than 747,000 participants, which was recently recognized as the largest hub of genetic data globally. The project links genetic, lifestyle and environmental data, like where you live, to health outcomes, and it has the potential to change the way we practice medicine for the better, says Dr. Dan Roden, a professor of medicine in genetic medicine and clinical pharmacology at Vanderbilt University in Nashville.
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“Now we have the opportunity to look at people’s genes, relate that to what they’re feeling or what the disease risk is, and come up with personalized treatments for those people who aren’t totally average,” Roden says.
Historically, much of the research shaping medical care was based on people of European ancestry, meaning the findings didn’t always reflect the diversity of the American population. With All of Us, “we have completely changed that,” says Stephanie Devaney, chief operating officer of All of Us.
From one-size-fits-all to precision medicine
The data from this expanded project, first launched in 2018, could help researchers identify which medications work best for certain people, which treatments might help prevent disease, and who may be at higher risk before symptoms appear. It could also point scientists toward new drug targets.
“This resource makes entirely new science possible,” Dr. Geoffrey S. Ginsburg, chief medical and scientific officer and acting chief data officer of All of Us, said in a news release.
Of the data collected so far, 62 percent is from people over the age of 50, says Hoda Anton-Culver, a distinguished professor at the University of California (UC), Irvine and principal investigator of the All of Us Southern California Consortium. Of those, about 16 percent are 50 to 59, 20 percent are 60 to 69, 18 percent are 70 to 79, 7 percent are 80 to 89, and approximately 1 percent are 90 or older.
Older adults are a key group to study, Anton-Culver says, because diseases like diabetes, heart disease and Alzheimer’s disease are more common with age.
“I think there’s a ton of value here for populations who are aging,” adds Devaney.
Contributors from nearly every ZIP code in the U.S. are included, as are some people who may have been excluded from traditional clinical trials, including older adults and those on multiple medications.
Participants can share biological samples such as blood, saliva and urine at more than 45 in-person centers. Other data comes from wearable devices, survey responses and electronic health records (EHR), including clinical notes. Some participants have medical records going back decades, Devaney says.
Researchers using All of Us must register how they’re using the information, Devaney says. Nearly 23,000 research projects worldwide are underway, and more than 1,400 studies have been published using the data. So far, All of Us is the largest genetic information database on the globe.
All of Us records are already being used in published research. Recent findings include:
- A test that can predict a person’s genetic risk for eight cardiovascular conditions
- A study demonstrating that 8,000 to 9,000 daily steps are ideal to protect people from multiple chronic conditions
- A low-cost prostate cancer risk model that could better assess an individual’s risk
- A study showing that 10,700 steps can lead to a lower risk of type 2 diabetes
- The discovery of protective gene variants in some people at high risk for kidney disease
- The establishment of a link between steps per day and optimal recovery after surgery
All of Us aims to recruit 1 million Americans to participate in the research. For more information or to sign up, visit www.joinallofus.org.
An eye to the future
UC Irvine is one of a few institutions nationwide that’s part of All of Us’ Eyes on Health Partnered Research Study, which collects data (including imaging) from participants’ eyes to explore connections between eyes and overall health.
“By integrating eye imaging into our existing dataset, we’re creating powerful opportunities to discover how the eye connects to conditions like cardiovascular disease, diabetes and neurological disorders,” All of Us CEO Josh Denny said in a statement.
The key takeaways were created with the assistance of generative AI. An AARP editor reviewed and refined the content for accuracy and clarity.
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