MERIDEN — Daisy Burgos is one in a million — 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 a decade.
She recalled that she was waiting for a doctor’s appointment at the Meriden Community Health Center and was approached by an All of Us coordinator. She gave him medical information and ended up serving on one of the program’s community advisory boards.
“Y decided to participate and follow the steps,” she said in Spanish in an online interview. “And then I liked it, so I stayed.”
The program has been active in Connecticut since its national launch. In July 2016, Middletown Community Health Center hosted one of six pilot sites. By December of that year, All of Us had received a $1.5 billion appropriation from Congress for a 10-year study run by the National Institute of Health.
All of Us has since branched out to include three new locations in New London, New Britain and Meriden. These cities, including Meriden, are ideal places to recruit diverse participants, as nearly twice as many Latinos in the four cities as the national average. , according to 2020 census data.
The Meriden program at 134 State Street has experienced a number of setbacks due to the pandemic and lack of staff. However, the center reopened in October and has since begun recruiting participants unaffiliated with the Meriden Community Health Center. Meriden alone has enrolled 697 participants so far, said Thelma Nanbigne, Meriden research coordinator. Nationally, the program has recruited more than 523,000 volunteers so far.
One of the recurring problems in medical research is the lack of diversity among participants in clinical trials. Earlier this year, the Federal Drug Administration (FDA) released its annual Drug Trials Snapshot that tracks the diversity of clinical trial participants.
According to the report, about 32,000 people participated in drug trials in 2020. Of these, 75% of participants were white, 8% black and only 11% Hispanic. These figures represent a significant discrepancy between clinical drug trials and the actual population, as the 2020 census reported that 58% of the population was white, 12% black and 19% Hispanic.
This discrepancy can lead to drug safety and medical information issues, as people of different ages, races, and ethnicities may react differently to certain medical products. For this reason, the FDA encourages diverse participation in clinical trials.
“Participants in clinical trials must represent the patients who will use the medical products. This is often not the case – people from racial and ethnic minorities and other diverse groups are underrepresented in clinical research,” the FDA said on its website.
However, despite the need for diversity in medicine, the participation of minorities in medical research has been an ethical issue, notably in the high-profile case of Henrietta Lacks, a black woman whose cancer cells were removed by researchers at her without his knowledge or consent. Lack cells have been invaluable to medicine.
By creating a diverse database open to researchers and citizen scientists, All of Us attempts to challenge the status quo.
Melissa Sigua is the participant experience manager and works with the Middletown location of All of Us. She explained that the goal of the program is to give volunteers like Burgos a bigger voice in the future of the 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 are asked to share information such as electronic health records, basic demographic information, anonymous hip and waist measurements — and perhaps even blood or urine samples. However, she pointed out that the level of detail of the study is tied to the comfort of the participant and that they can opt out whenever they feel uncomfortable.
Sigua also said participants have access to all of their records after the study is completed. After participating, volunteers receive a free result of “fun facts” about certain genetic traits, such as whether a person likes cilantro. They are also given their own genetic ancestry, risk of certain health issues, and how the body might react to certain medications. Sigua added that the program also refers volunteers to a genetic counselor if they have certain genetic traits of concern.
Thelma Nanbigne has been working with All of Us for a year. She is a jack-of-all-trades as she does participant awareness, education, surveys, measurements and even blood samples. However, her favorite part of the program is sharing traits and genetic information with participants.
“They can not only contribute, but also learn about their health,” she said. “I know it’s expensive to do some DNA testing. 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 because the results of medical studies are often only published in peer-reviewed medical journals and participants without a medical degree often do not understand them. .
Burgos was one of the people invited to share blood samples. As a two-time cancer survivor, she has a well-justified hatred of needles.
“Since I was a cancer patient; they mutilated my body a lot with needles,” she said.
Anyway, she decided to take the test because she wanted to know if her cancer was hereditary. She found out not.
Having access to her genetic information is important to Burgos because her son was born with osteogenesis imperfecta, a rare genetic condition that makes bones brittle and broken easily. Burgos said the disease is very rare, as only two in a million people have 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 further the cause by attending monthly community meetings and providing feedback on community outreach and survey questions.
However, there is still a long way to go if All of Us wants to enroll one million participants. All of Us is recruiting through their website, but also plans to do community pop-ups, like the one they attended at the Puerto Rican festival in Meriden.
“The goal of the program is to enroll a large population to reflect the country’s diversity,” Nambigne said. “So we are all welcome to participate in the program, no matter where they are from, who they are.”
Latino communities reporter Lau Guzmán is a corps member of Report for America, a national service program that places reporters in local newsrooms. Support the RFA reporters at the Record-Journal with a donation by clicking here https://bit.ly/3Pdb0reTo learn more about RFA, visit www.reportforamerica.org.