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A group of volunteers in light blue shirts pace up and down the sidewalks in front of a church on East Commerce Street, looking to recruit local residents who are willing to share their DNA as part of a nationwide initiative to provide new insights into who gets sick and why, and how to prevent and treat chronic disease.
The National Institutes of Health’s All of Us research program arrived in San Antonio on Jan. 21, looking to collect biological samples from from all walks of life and all racial and ethnic groups willing to have their genomes sequenced. The collection of donated blood samples and health information will help develop medicines and treatments tailored to the individual patient, known as precision medicine.
“Right now, there seems to be this one-size-fits-all experience when we go to the doctor. And that’s because we don’t have enough research to do it any other way,” said Francisco Huizar, who is managing the All of Us bus tour across the U.S. “By collecting these samples, we are trying to be as inclusive as possible. Right now, there are some [demographics] that are not as represented,” including women, the elderly, and Hispanic people.
Since spring 2018, the All of Us program has visited more than 100 cities across the nation in its light blue donation bus, where DNA donors provide blood and urine samples and provide information about their background and lifestyle.
Jessica Corpus was walking to her next bus stop when she came across the All of Us bus in the parking lot of the Second Baptist Church at 3310 E. Commerce St. on San Antonio’s East Side. After program volunteers explained the initiative, Corpus was eager to donate her biological samples.
“For the longest time, I thought I was Hispanic, and that’s how I identified. But I recently came to find out that the majority of my family came from the Philippines,” Corpus said. “Also, my mom has been diagnosed with sarcoidosis, which we learned is a mostly black and European illness. So, I think it’s really interesting how your [background] affects things like that.”
The All of Us bus will remain at its current location through Sunday, Jan. 27, taking samples from 10 a.m. to 4 p.m. On Monday, Jan. 28, the bus will relocate to Last Chance Ministries at 404 Brady Blvd. on the city’s West Side, where they will operate from 11 a.m. to 6 p.m. until Feb. 1.
In addition to the DNA sample, other information collected from participants will give researchers an opportunity to better understand the impact of lifestyle and environment on health outcomes, Huizar said.
“Everyone who participates will be helping researchers to develop better strategies to keep people healthy in a very precise way,” he said.
After the DNA samples are collected, they are shipped directly to the program’s biobank, a collection of blood samples and health information, at the Mayo Clinic in Rochester, Minnesota. Donors also can give consent for researchers to access their electronic medical record, but such consent is not required for participation.
To protect participants’ privacy, all personal information collected is removed to de-identify the sample researchers access. Participants also will be able to view their DNA sequencing results online, which may give insight into risks for certain diseases such as Alzheimers, and how genes may interact with certain medications.
If a donor wants to withdraw from participating in the program, his or her biological samples will be removed from the biobank and destroyed, Huizar said.
Considered one of the most ambitious biomedical research efforts ever undertaken, the All of Us research program was created in 2015 with $215 million in initial funding. In 2016, Congress authorized $1.45 billion for the project over 10 years as part of the 21st Century Cures Act, designed to help accelerate medical product development and bring innovations to patients who need them faster and more efficiently.
“I’m alive today because of precision medicine, and I think everyone deserves that same opportunity no matter the color of your skin, your economic status, your age or sex or gender,” All of Us program director Eric Dishman said in an online statement. “It will truly take all of us,” to create a more accurate representative sample of population diversity in the U.S.
Participants with a fitness tracking device who wish to share data with the program can sync their device through an online portal; those without devices are given the option to create an account and enter their physical activity information manually.
“What’s cool is that people can take all of the information they put into the platform, including the DNA sequencing and [fitness tracker] information, and take it with them to the doctor to use as part of their medical history,” Huizar said.
Corpus told the Rivard Report that at age 38 she does not have any current health problems or concerns, but that she wanted to have her genetic information to pass on to her children “in case they had any problems in the future.”
“I think that most people don’t think about it, or are in the dark [about their genetics]. I know that I was,” she said. “I think it’s cool that they can track your blood and break it down to know so much about [you]. It might not be important for me to know now since I am doing good, but I want to have this information available to me and my children.”