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Tuskegee University bioethicist and professor Dr. Stephen Sodeke has been selected to participate in the southern portion of the All of Us Research Program — a nationwide effort aimed at advancing individualized prevention, treatment and care for people of all backgrounds and health conditions. The Southern All of Us Network includes direct efforts of 11 universities and medical facilities throughout Alabama, Mississippi and Louisiana.
Under the $45 million grant program awarded by the National Institutes of Health (NIH), All of Us launched on Sunday, May 6, as a precision medicine initiative whose objective is to improve overall health, as well as prevent and treat diseases by encouraging the public to take an active role in steering the future of health research.
According to Sodeke, the purpose of the southern portion of the program, led by the University of Alabama at Birmingham in partnership with Tuskegee University, is to help expand the overall research effort. Sodeke’s involvement includes helping to develop relationships with community partners and raise bioethically important questions related to the strategies or methodologies researchers use when determining prevention and treatment solutions for the future.
The research program will use data collected from participants nationwide; however, the Southern All of Us Network participant data will only come from Alabama, Mississippi and Louisiana.
“Scientists are now shifting away from the ‘one-size-fits-all’ model when it comes to developing medical treatment for patients, and instead are looking into more specific research that could benefit a true population of a diverse audience,” Sodeke noted.
“Rather than continuing to use the old model, we can improve health by tailoring therapy, treatment and prevention mechanisms to particular individuals,” he continued.
The data provided by consented individuals will look at given factors, such as the differences in people’s lifestyles, environmental factors, and even their particular genetic makeup.
“We want a diverse database that reflects the population of the United States — that’s the only true way to precisely prevent and treat a variety of health conditions,” Sodeke explained.
The program will provide access and return of useful information to participants, and controlled access to vetted specific researchers involved in the study in a responsible way.
After giving consent, participants are requested to share different types of health and lifestyle information, including electronic health records, as well as various medical samples to be collected under universal precautions by certified personnel in designated areas.
Sodeke noted that the information shared will be highly privacy-protected, encrypted and stored on secured servers. He also explained that individuals should take advantage of this type of research program.
“If people have a family history of certain diseases, this study could possibly link them to what their potential risk factors could be; therefore, the data could also flag you for risks you might want to avoid because they can have negative effects on your current or future health,” he continued.
Sodeke specifically mentioned a family history of diabetes or even hypertension diseases that would make participating advantageous for both the participant and for others in the study.
“This type of research initiative also provides the opportunity for researchers to understand how to use data from current participants to tailor and provide accurate treatment and prevention strategies in the future,” said Sodeke.
Sodeke says when more data is available from diverse populations, everyone can benefit from the research and advance the future of health care. He also emphasized the need for Tuskegee and other southern rural communities underrepresented in biomedical research to get involved because they can play a critical role in the initiative by making the data more robust.
“We are in an era where one size does not always fit all, and there needs to be other ways we can develop personalized treatments within our own communities,” he said. “We have to find ways to develop relationships and engage the community in order to increase awareness and capture the data we need that will help us in the long-run.”
Other partners in the Southern All of Us Network include the University of Alabama at Birmingham, Cooper Green Mercy Health Services, Huntsville Hospital, Louisiana State University Health Sciences Center, Tulane University, UAB School of Medicine’s Montgomery Internal Medicine and Selma Family Medicine programs, UAB School of Medicine’s Huntsville Regional Medical Campus, University of Mississippi Medical Center, University of South Alabama Health System, and University Medical Center in Tuscaloosa.
The All of Us program is seeking 1 million people nationwide, and currently, more than 96,000 participants have joined in the last two months. The Southern All of Us Network has attracted 671 full participants to date. Alabamians age 19 or older, regardless of health status, are eligible to enroll in the program and can learn more about the program by visiting www.joinallofus.org.
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