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St. Louis researchers want residents' help in building national medical database

An illustration of two silhouettes with doctors sitting inside them and pieces of paper being whisked to a computer.
Maria Fabrizio
Special to NPR
The National Institutes of Health-led project hopes to study data from 1 million or more people living in the United States to accelerate health research and medical breakthroughs.

Health researchers in St. Louis have joined a high-profile national initiative that aims to create a database for researchers studying how people of different demographics develop diseases and respond to treatment.

SSM Health and St. Louis University plan to recruit 1,000 people to take part in the National Institutes of Health’s All of Us study. The initiative was created in 2015 with the goal of recruiting 1 million people to share their medical information nationwide.

The large-scale project is meant to collect data from a diverse group of people. "In the U.S., participants in health surveys and clinical trials are usually white,” SLU health management and policy professor and co-investigator Kimberly Enard said.

“Once you get those markers and understand how they play out in particular with some of the social determinants of health, it really does lead to an ability to provide better treatments,” she said.

The nationwide project collects data such as where people live, their race and health history. Participants fill out a survey and may share their medical records or donate blood or other samples.

That data, stripped of names and other identifying information, is added to a research cloud that researchers, drug developers and other scientists can use.

According to the initiative’s website, “registered researchers can access data from surveys, genomic analyses, electronic health records, physical measurements and wearables to study the full range of factors that influence health and disease.”

Enard said, “Because certain groups are underrepresented in medical research, the therapies that are available to us when we get sick and that are going to be available to our children and family members aren't as precise.”

For example, Black people have worse health outcomes for many chronic diseases, she said. Better genetic information could help make therapies work better for people with those illnesses.

The massive size of the database will better represent the demographics of the United States, SLU medical school professor Rick Grucza said.

“We have such a diverse population that we really want to make sure everybody is represented in this study, and the sheer magnitude of the study helps us to accomplish that,” he said.

A white man in a navy cardigan and gray shirt, Black woman in a black shirt and blue coat and white man with a tan shirt and brown coat stand for a portrait near a window.
Sarah Conroy
St. Louis University
From left: St. Louis University researchers Dr. Jeffrey Scherrer, Dr. Kimberly Enard and Dr. Rick Grucza, lead the “All of Us” study collaboration with SSM Health.

The data can be used not only to study potential medical treatments but also, because health records are shared, to see who has gotten treatment for alcohol use disorder and other problems.

“I’ve seen papers [based on the data] about who gets medication treatment and who doesn’t. So we can look at health disparities in the receipt of treatment, [and] we can look at treatment outcomes,” Grucza said.

Researchers using the database also could look at health disparities among urban and rural patients, or patients with different income levels or differences in childhood backgrounds, he said.

Some scientists have raised concerns that the initiative provides a simplistic view of how race and genetics are connected.

Brett Maricque, a professor of genetics at Washington University Medical School and co-principal investigator at the Black Genome Project, said he lauds the All of Us project’s objectives of making a more representative database of the country’s population. He enrolled in the program himself.

But he cautioned that biological data associated with race and ethnicity can be misused by white supremacists and other people with motives to claim one race is superior to another.

“I think in principle sequencing more people’s genomes can have super positive effects on people’s health,” Maricque said. “[But] if we don’t really wrestle with the history and the contemporary racism that’s built into biomedical research … we can end up doing more harm than we think.”

Studies that take race into account should consider how race interacts with social determinants of health, including where people live and social habits, he said.

The project also is an opportunity for researchers to learn more about local communities and how they view their own health.

“A DNA kit comes in the mail, you take the surveys online,” Maricque said. “I think there’s still a piece of the puzzle that's missing, which is generating human engagement and allowing diverse voices to contribute to the progress of the project.”

Enard said St. Louis offers a great opportunity to recruit patients not usually found in study databases.

“We realize that's not the easiest thing to do, because there's a lot of history about participating in research,” she said, referring to the country’s history of conducting medical experiments on Black people without their consent. “We’re able to do community-engaged work and build trust in the community, let people know about the study, and they can understand how to participate.”

The effort is starting with mailers, flyers and community events to spread the word.

“A lot of times people say it's challenging to get people of color to participate,” Enard said. “Well, a lot of people say, ‘Well, you didn't ask!’ So I think we need to make sure that we're asking people to participate.”

Those who would like to learn more about enrolling in the program can visit the All of Us website or call 314-977-7600.

Sarah Fentem is the health reporter at St. Louis Public Radio.