“The whole world was trying to understand what was going on, but they didn’t have this resource,” said Hung, whose findings were published in the journal JAMA Internal Medicine in January.
The MVP, which is run by Veterans Affairs and holds data on over 150,000 Black Americans, was crucial to her discovery. Now, thanks to Hung’s hunch and the database’s speed and reach, a pharmaceutical company is close to seeking Food and Drug Administration approval for a new drug targeting APOL1; and African Americans, long underrepresented in medical research, got some overdue helpful attention.
Established in 2011, the MVP has enrolled 903,000 contributors and is on track to reach its million-member goal next year.
In the voluntary program, veterans contribute a blood sample for DNA, permit confidential access to their medical records and fill out occasional surveys to gather information, including their family medical history, exposure to toxic chemicals while in the military, sleep and exercise habits, and mood.
The broad goal is to speed development of “personalized medicine,” or individualized and preventive health strategies, said Sumitra Muralidhar, the MVP’s director. “I get goose bumps when I think about it,” she added. “We’re making a dent.”
“The MVP is probably the most useful biobank worldwide,” said Joel Gelernter, a professor of psychiatry at the Yale School of Medicine. Gelernter has collaborated with other researchers on more than a dozen papers based on the MVP, including a recent study of the biological underpinnings of post-traumatic stress disorder and depression. He said the biobank has been particularly helpful for investigating PTSD and misuse of substances such as opioids and alcohol, both conditions that afflict more veterans than civilians.
The explosion in genetic research following the 2003 completion of the Human Genome Project has inspired several similar projects.
The All of Us program at the National Institutes of Health, launched in 2018, has also invited 1 million Americans to help build a biobank. So far, it has collected samples of blood, saliva or urine, access to medical records and data from wearable devices from more than 374,000 participants, nearly half of whom identify with a historically underrepresented racial or ethnic group. The UK Biobank, which began in 2006, has gathered data on a half-million subjects. Other large programs include Vanderbilt University’s BioVU and FinnGen in Finland.
The MVP, however, is not only the largest biobank but also the most diverse in representation, Muralidhar said.
The program has grown so quickly in part because of the built-in reach of VA, with more than 100 clinics participating. Another advantage is the altruism of its unpaid participants, Muralidhar said.
“We surveyed veterans before we launched the program and 70 percent said they would participate if asked,” she said. “They’ve expected nothing in return, and the key thing they’ve said over and over is ‘Will this help another veteran? If it does, I’m in.’ ”
Sylvester Norman, 67, a Coast Guard veteran and retired day-care worker in Nashville, said he was excited to join when he first heard of the program some two years ago. Norman is the oldest of four brothers, all of whom have suffered kidney illness. Two have died and another has received two transplanted kidneys.
“This isn’t going to benefit me at this stage, but my goodness, this will be beneficial for people coming behind me, because I know what I’m going through,” he said.
Major journals have published an eclectic range of research based on MVP data, with several studies claiming to be the largest of their kind.
In a May 2021 study in Nature Neuroscience on the genetic nature of depression involving more than 1 million participants, including 300,000 MVP subjects, Gelernter and other researchers identified several new genetic variants that might increase the risk of the disorder.
A study published in August in the journal Nature Medicine on the genetic risk for coronary artery disease (CAD) drew on data from more than 400,000 participants in the MVP, finding that the risk for CAD appears to be the same among White, East Asian, African and Indigenous American populations.
Another MVP-based study, published in June, linked 127 medical conditions to genes associated with height, with most of the results applicable to both Blacks and Whites. Being tall, it found, is associated with a lower risk of high blood pressure and heart disease, yet also carries a higher risk of atrial fibrillation and some circulatory disorders. A separate research project involving more than 190,000 veterans has found that eating yogurt is good for your heart.
Muralidhar said she doesn’t plan to stop after registering the millionth veteran, although she might need a new name for the program. Going forward, she said she hopes to focus on broadening the range of participants to include more women — currently less than 10 percent of those in the biobank, partly because of underrepresentation of women in the military — and also illnesses that have received less attention from researchers.
“We’re understanding certain medical conditions better than ever before, and we want to keep going,” Muralidhar said.