Medical research does not benefit everyone. This effort hopes to create one of the most diverse health databases ever created.

After a two-year hiatus caused by the pandemic, the NIH project recently came to a halt in Colorado.

The program invites more than a million people from all walks of life to help build what it calls one of the most diverse health databases of its kind and improve medical treatment in diverse groups.

Nevarez agreed to answer survey questions and share medical information, including his urine and blood DNA. It all goes into the giant search database. Nevarez said she was happy to help.

“I think it’s a good program. And I think it’s good to do this stuff for everyone,” she said.

Nevarez is originally from Mexico. She said the program’s diverse pool will create a powerful tool for researchers.

“I think it’s my main purpose to come here, just to show my people, my community.” Nevarez said. She runs a diabetes prevention program with Vuela for Health, a health promotion group working with the Latin American community. “We have to do it, we have to participate.”

Why Science Needs Non-White Participation

John Daley/CPR News
An exhibit from the National Institutes of Health’s All of Us Research Program, called The Journey, is traveling across the United States to engage communities historically underrepresented in medical research. It stopped in the Denver area on September 1, 2022. All of Us principal investigator Edgar Gil Rico says that historically, clinical trials have often underrepresented communities of color.

The Hispanic/Latino community represents nearly 20% of the US population, but only about 5% of clinical trial participants. That same small number is also true for black Americans, who make up more than 13% of the population, according to the program.

Often, people from diverse backgrounds weren’t invited to participate or explained how it’s helpful, said Edgar Gil Rico, All of Us principal investigator at the National Alliance for Hispanic Health. “Why is this important to me? Why is it important for the community? he said.

It answers its own question: to help develop medicines and treatments adapted to each individual. This is called precision medicine. He said health is not just a list of different symptoms you have.

“A person’s health is more global. Where you live, the type of activities you do, your family medical history, your genetics all play a part in providing the right treatment for you,” he said.

John Daley/CPR News
Jaharri Asten came on the All of Us bus from the Lowry Family Health Center to provide samples of her DNA.

“It will improve long-term treatments,” said Jaharri Asten, who came on the bus from Lowry Family Health Center to provide samples of her DNA.

“I know a lot of people, especially minorities, who feel like doctors don’t understand their culture,” she said. “And so having that data will help inform doctors.”

Asten is an addiction and substance abuse counselor at Denver Health and said better research could help improve treatment based on genetic and cultural differences. “So it would definitely be a good idea to have different samples so the medicine could be more specialized for each person,” she said.

Asten was excited about potential scientific advances. “I just thought it was really fascinating,” she said. “Whenever I have the opportunity to participate in research, I do so because you never know who it will help or who might be impacted in the future.”

“This drug works with white people”, less so for others

Participant Angelica Nevarez, left, said she volunteered to join the program to help diversify medical research and ‘to show my people, my community, we have to do this, we have to to participate”.

In the United States, more than 370,000 participants have gone through all the basic registration steps, including providing a biological sample, either blood, saliva or urine, according to an All of Us.

Offering your own DNA samples to build this database may be too, too risky for some.

But the program says the information is anonymized and the data is protected and secure.

Mayela Picado, a Boulder nutritionist, said she’s comfortable with compromise.

“I know how research works,” she says. “We are going to be a number. So my genetics and all my information would just be a number.

Alok Sarwal is a big supporter of this project. He runs a diverse medical clinic with offices in Denver and Aurora, the Colorado Alliance for Health Equity and Practice. It serves 20 ethnic groups.

He encouraged community members to participate. “Not only are we contributing to the database, but we are also going to be users of the database,” said Sarwal, CEO and co-founder of the clinic. Its mission is to improve the health of the state’s immigrant communities through culturally and linguistically appropriate disease prevention, health education, wellness activities, early detection, and self-management.

Her colleague, program manager Suegie Park, gave an example of how this information could be useful. She said that there is a popular anticoagulant, developed by a pharmaceutical company. Blood thinners are essential for stopping blood clots, preventing heart attacks and strokes.

“This drug works with white people,” she said, research showing more than 75% of the time. “Very effective!”

But it’s less than 50% effective for Asians, she says. And a lot of the patients in his clinic are Pacific Islanders, for whom it doesn’t work so well. Its effectiveness with “native Hawaiians is only 27%”.

These kinds of concerns are why the NIH created the project. The agency was well aware that “‘oh, we need multi-ethnicity,'” Park said.

In Colorado, 2,175 participants completed all basic steps, including contributing a biological sample. Nearly 80% identify with a category the program calls “underrepresented in biomedical research.” This includes racial and ethnic groups, sexual and gender minorities, rural populations, older people, people with disabilities, and those with low levels of education and/or income, depending on the program.

So far, 17% of Colorado program participants identify as Hispanic, according to the program; that’s a little less than their 21.6% share of the state’s population. The numbers for other ethnic groups are also lower than their share of Colorado’s population: 2% black attendees, compared to their 4.3% share of the state’s population, 1% Asian (compared to 3.6%) and 1% American Indian/Alaska Native (compared to 1.7%).

How All of Us research is having a local impact

Edgar Gil Rico, All of Us Principal Investigator with the National Alliance for Hispanic Health, speaks with program participant Jessica McPhee, of Denver.

The project is also getting a lot of attention from researchers, like Dr. Nathan Clendenden, an anesthesiologist and professor at the University of Colorado.

He said cardiovascular disease, which includes heart attacks and strokes, is the biggest killer. As a rule, he only studies patients in the hospital. But that’s a limited number of patients and often doesn’t include everyone in the community, Clendenen said.

“I think that’s been a blind spot in the research is that it’s not necessarily representative,” he said.

Now Clendenen and his team are exploring a new way to start solving this problem. They have initiated a new study, on the prevention of blood clots, using the extensive genetic database of the All of Us research program. vascular disease in the elderly after transcatheter aortic valve replacement.)

“The drugs already exist. So it’s really about taking existing tools and matching patients to them,” he said.

Clendenen said research conducted through the database promises to make medicine more precise, ideally personalizing treatment for each patient and improving, if not saving, lives.

So far, 31 Colorado researchers have registered to use the All of Us Researcher Workbench and nearly two dozen research projects have been started, according to the program. These include studies of cardio-metabolic health outcomes, genetic risk factors for thyroid cancer, complications of cataract surgery, and Dr. Clendenen’s research on platelet reactivity as a risk factor. of stroke.

(For details, search the public Directory of research projects.)

Another benefit for participants is to learn more about their own DNA. The All of Us program notes on its website that it will only show results that a participant wants to see.

This information can include genetic ancestry, including where someone’s family may have lived hundreds of years ago, genetic traits, such as why a person might like or hate cilantro, if they may have a higher risk of certain health conditions and how their body might react to certain medications.

The program representatives “said you could ask about any illnesses you might have, or whether there were any disorders or whatever. So, of course, it’s interesting,” said Asten, who is interested to see what her genetic profile shows. “You could see your ancestry and who your most recent ancestors are. So I thought that would be pretty cool too.