Tour of NIH project comes to town
Federally funded effort seeks health info from 1 million Americans
Vendors lined the path to the food trucks selling arepas, churros and Cuban sandwiches at the Puerto Rican and Cuban Festival on Saturday, vying for festival-goers’ attention among live music and performances.
The path was a bit clearer to the big, blue trailer wrapped in photos of a multicultural America, which welcomed attendees inside for a quick lesson on genetics, precision medicine and the National Institutes of Health’s $1 billion research project, dubbed All of Us.
“I’d never heard of precision medicine, but I think it’s pretty important because everybody’s different, so what might work for me doesn’t work for you,” said Jean Carrasquillo, 28, who signed up to receive more information about participating in the study. “It’s important that we progress on that specificity when it comes to medicine and health.”
In an effort to get 1 million Americans to provide anonymous medical information, including DNA samples, the ambitious, federally funded project sent a team to travel the country, educating the public on the project’s goals and what’s involved in participating. That traveling team had its first stop in Houston on Saturday, and it will be visiting local clinics, churches and community centers for the next two weeks.
“How many mornings can you wake up and actually do something that helps humanity?” asked Steve Curran, one of the tour’s managers. “Because this is going to help people from all walks of life.”
Medical database to be created
The detailed medical information of 1 million anonymous Americans will help researchers find patterns in participants’ genes and history, making medicine more efficient and effective. That basically describes precision medicine: the act of treating people as individuals based on their specific ailments, symptoms and genes.
The only way to learn that more than two types of diabetes exist, or who is most at risk for experiencing chronic pain, or who would react better to certain cancer treatments, is to gather that information from many individuals and analyze it, said Alyssa Cotler, the director of marketing and communications for the project.
“We’re looking at not just the DNA but also lifestyle, environment and behaviors, to really get a better understanding of: What are all of the factors that could impact somebody’s health, and how do they intersect?” Cotler said.
To create that biobank, or medical database, the project is looking for volunteer participants. Once creating an account on joinallofus.org, participants can choose to share their electronic medical records and prescription histories, answer survey questions or submit biosamples — blood and urine.
The Puerto Rican Festival attendees who toured the All of Us trailer on Saturday learned about most of that information through team members and interactive displays. Jackie Perry, a nurse at the Conroe Emergency Room, went in because she likes to stay on top of what’s new in her field.
As a member of the National Association of Hispanic Nurses, she’s already familiar with the lack of representation for minorities in biomedical, especially genetic, research. “If you got nothing to hide, there’s nothing to worry about,” Perry said. “Hispanics need to quit being scared of finding out whatever it is they’re worried about. Just give out the information. It’s just part of research — you have to do that. That goes for all Hispanics. They’re afraid of giving out information because they are going to use it against them.”
In fact, one of the goals of the traveling All of Us team is to reach out to people who otherwise may not trust strangers with their medical information and to include them in the future of medicine, Curran said.
“This is a great festival for us because it’s ethnically diverse,” he said. “But other than that, we’re in neighborhoods, parked on the street near a free clinic and drawing people in with community organizers. (The organizers) say, ‘Come on. They’re here for you.’ We’re here so we can represent you in medical research. We’re out to get the unrepresented.”
100,000 have already shared
All of Us is the second name for the research project. When announced by former President Barack Obama in 2015, it was called the Precision Medicine Initiative. A year later, it received congressional approval — and $1.5 billion for 10 years of study. All of Us launched and started enrolling participants in May.
So far, it’s brought in about 100,000 people who are willing to share some amount of their medical information.
However, the true origins of precision medicine and All of Us lie in the Human Genome Project, Cotler said.
One of the key researchers in that groundbreaking project, which finished mapping 10 percent of the human genome in 2003, was geneticist Richard Gibbs, the founder and director of the Human Genome Sequencing Center at Baylor College of Medicine.
That center, in partnership with the University of Texas Health Science Center and Johns Hopkins University, is one of three lab groups chosen to sequence genes for All of Us.
“This is the coalescence of everything we started to think about in the late ’80s,” Gibbs said. “We were thinking: ‘Medicine is so empirical. We know so little about the real reason things are done — there’s so little science in medicine. Why don’t we find one way we can change that?’ Our way was understand the content of the human genome.”