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鈥檚 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,鈥� SLU health management and policy professor and co-investigator Kimberly Enard said.
鈥淥nce 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,鈥� 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鈥檚 website, 鈥渞egistered 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.鈥�
Enard said, 鈥淏ecause 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.鈥�
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.
鈥淲e 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,鈥� he said.
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.
鈥淚鈥檝e seen papers [based on the data] about who gets medication treatment and who doesn鈥檛. So we can look at health disparities in the receipt of treatment, [and] we can look at treatment outcomes,鈥� 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 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 , said he lauds the All of Us project鈥檚 objectives of making a more representative database of the country鈥檚 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.
鈥淚 think in principle sequencing more people鈥檚 genomes can have super positive effects on people鈥檚 health,鈥� Maricque said. 鈥淸But] if we don鈥檛 really wrestle with the history and the contemporary racism that鈥檚 built into biomedical research 鈥� we can end up doing more harm than we think.鈥�
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.
鈥淎 DNA kit comes in the mail, you take the surveys online,鈥� Maricque said. 鈥淚 think there鈥檚 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.鈥�
Enard said St. Louis offers a great opportunity to recruit patients not usually found in study databases.
鈥淲e realize that's not the easiest thing to do, because there's a lot of history about participating in research,鈥� she said, referring to the country鈥檚 history of conducting medical experiments on Black people without their consent. 鈥淲e鈥檙e 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.鈥�
The effort is starting with mailers, flyers and community events to spread the word.
鈥淎 lot of times people say it's challenging to get people of color to participate,鈥� Enard said. 鈥淲ell, a lot of people say, 鈥榃ell, you didn't ask!鈥� So I think we need to make sure that we're asking people to participate.鈥�
Those who would like to learn more about enrolling in the program can visit the or call 314-977-7600.
