MERIDEN – Daisy Burgos is one in millions – or hopes to be. In 2019, Burgos participated in All of Us, a national research program that aims to create a diverse database by collecting health information from one million participants over the course of a decade.
She recalled waiting for a doctor’s appointment at the Meriden Community Health Center and being approached by an All of Us coordinator. She shared her medical information and eventually ended up on one of the program’s community advisory boards.
“Y chose to participate and follow the steps,” she said in an online interview in Spanish. “And then I liked it, so I stayed.”
The program has been active since its statewide launch in Connecticut. In July 2016, Middletown Community Health Center hosted one of the six pilot sites. As of December of this year, All of Us had received $1.5 billion in funding from Congress for a 10-year study administered by the National Institutes of Health.
All of Us has since expanded to include three new locations in New London, New Britain and Meriden. These cities, including Meriden, are ideal locations for recruiting diverse participants, as the four cities have almost twice the number of Latinos as the national average, accordingly Data from the 2020 census.
The Meriden program at 134 State Street has suffered a series of setbacks due to the pandemic and staff shortages. However, the center reopened in October and has since begun recruiting participants not affiliated with the Meriden Community Health Center. To date, Meriden alone has enrolled 697 participants, said Meriden research coordinator Thelma Nanbigne. Nationwide, the program has enrolled over 523,000 volunteers to date.
One of the persistent problems in medical research is the lack of diversity among clinical trial participants. Earlier this year, the Federal Drug Administration (FDA) released its annual Drug Trials Snapshot, which tracks the diversity of clinical trial participants.
According to the report, about 32,000 people took part in drug trials in 2020. Of these, 75% of the participants were white, 8% black, and only 11% Hispanic. These numbers represent a large gap between clinical drug trials and the actual population, as the 2020 census found that 58% of the population was White, 12% Black, and 19% Hispanic.
This gap can create drug safety and medical information issues because people of different ages, races and ethnicities may respond differently to certain medical products. For this reason, the FDA encourages diverse participation in clinical trials.
“Participants in clinical trials should represent the patients who will use the medical devices. This is often not the case – people from racial and ethnic minorities and other diverse groups are underrepresented in clinical research FDA said on their website.
However, despite the need for diversity in medicine, minority participation in medical research has been an ethical issue, notorious in the well-publicized cases of Henrietta is absent, a black woman whose cancer cells were harvested by researchers without her knowledge or consent. Lack’s cells were invaluable to medicine.
By creating a diverse database open to researchers and citizen scientists, All of Us seeks to challenge the status quo.
Melissa Sigua is the Participant Experience Lead and works with All of Us in the Middletown location. She explained the goal of the program is to give volunteers like Burgos a bigger voice in the future of medical research.
“We don’t call our volunteers ‘subjects’; we call them ‘partners’ or ‘participants,'” Sigua said in an online interview.
Sigua explained that once a participant joins, they’re invited to share information like electronic health records, basic demographic information, anonymous hip and waist measurements — and maybe even blood or urine samples. However, she emphasized that the level of detail of the study is related to the comfort of the participants and they can opt-out if they do not feel comfortable.
Sigua also said participants will have access to all of their records once the study is complete. After participating, volunteers receive a free “Fun Facts” result on specific genetic traits, e.g. B. whether a person likes cilantro. They also get their own genetic lineage, risk of certain health conditions, and how the body might respond to certain medications. Sigua added that the program also refers volunteers to a genetic counselor if they have certain genetic traits.
Thelma Nanbigne has been collaborating with All of Us for the past year. She is a jack of all trades as she conducts attendee contacts, training, surveys, measurements and even blood sampling. However, her favorite part of the program is sharing traits and genetic information with participants.
“Not only can you contribute, you can learn more about your health,” she said. “I know that getting certain DNA tests is expensive. So having that for free is really, really good for a lot of people.”
Sharing information with participants and educating them about its importance is unusual in medical research, as results from medical studies are often only published in peer-reviewed medical journals and participants without medical degrees often do not understand them.
Burgos was one of the people invited to share blood samples. As a double cancer survivor, she harbors a well-founded hatred of needles.
“Since I am a cancer patient; They often lacerated my body with needles,” she said.
Regardless, she decided to take the test because she wanted to know if her cancer was hereditary. She found out it wasn’t.
Access to her genetic information is important to Burgos as her son was born with osteogenesis imperfecta, a rare genetic disorder that causes bones to become brittle and break easily. Burgos said the condition is very rare, with only two in a million people suffering from it. However, she said the trait was passed down to two of her grandchildren.
Because of the personal importance of genetic education, Burgos said she constantly tries to educate her family members about genetics and share her own information. She also helped drive the cause by attending monthly community meetings and providing feedback on community outreach and survey questions.
However, there is still work to be done if All of Us wants to enroll a million participants. All of us recruited through their websitebut also plans community pop-ups, like one they attended at the Puerto Rican Festival in Meriden.
“The goal of the program is to enroll a large population to reflect the diversity in the country,” Nambigne said. “That’s why we’re all welcome to participate in the program, no matter where you’re from, who you are.”
Latino communities reporter Lau Guzmán is a corps member with Report for America, a national aid program that places journalists in local newsrooms. Support RFA reporters at the Record-Journal by making a donation by clicking here https://bit.ly/3Pdb0reTo learn more about RFA, visit www.reportforamerica.org.