All of Us Research Program Delivers Health-Related Genetic Results to Participants – News

Historic precision medicine effort returns value to research participants by sharing personalized and actionable health-related reports.

inside all of us 1Historic precision medicine effort returns value to research participants by sharing personalized and actionable health-related reports.The National Institutes of Health All of Us Research Program has begun delivering personalized health-related DNA results to more than 155,000 participants, with reports detailing whether participants are at increased risk for specific health conditions and how their bodies might process certain medications. This marks an important milestone for the program as it fulfills its promise to share information and return value to participants.

The University of Alabama at Birmingham leads the All of us south network, made up of Alabama, Mississippi and Louisiana. To date, the South Network has more than 30,000 main participants. Nearly 24,000 of them are in Alabama. The UAB has registered 14,598 basic participants.

“This is an important step forward and one that we, and our participants, have been eagerly awaiting,” said Bruce Korf, MD, Ph.D., associate dean for Genomic Medicine at UAB. Marnix E. Heersink School of Medicine and contact the principal investigator of the Southern Network. “Value return for All of Us participants is a core tenet of the program. Those found to be at increased risk of disease based on genomic findings will be able to make better decisions about their health in partnership with their care providers.”

All of Us aims to partner with at least 1 million people who reflect the diversity of the United States to accelerate medical advances. About 80 percent of All of Us participants represent communities that have historically been underrepresented in medical research, and nearly 50 percent of All of Us participants identify with a racial or ethnic minority group. The program began returning genetic ancestry and trait results to participants in December 2020. So far, the program has provided genetic ancestry and trait results to more than 175,000 participants and continues to return about 6,000 results each month.

“Knowledge is powerful. By returning health-related DNA information to participants, we are changing the research paradigm, turning it into a two-way street, driving scientific and personal discovery that could help people navigate their own health,” he said. Josh Denny, MD, CEO. official of the All of Us Research Program. “This type of partnership with our participants is crucial to building trust and fulfilling our commitment to drive research that can deliver meaningful information for everyone.”

In this first phase of return of health-related DNA results, participants who provided a blood sample and consented to receive genomic information are being individually invited to receive their results. They can choose what health-related outcomes they want, if any. Those who choose to receive results will receive an alert several weeks later when their results are ready. Additionally, genetic counselors are available to meet with participants and their family members or healthcare providers to discuss and interpret their results.

The program’s hereditary disease risk report, based on the recommendations of the American College of Medical Genetics and Genomics, includes 59 genes and variants that are associated with serious and medically actionable health conditions. These genes are linked to an increased risk of specific cancers, heart conditions, blood disorders, and more. The program anticipates that 2-3% of participants will receive a result showing a pathogenic or likely pathogenic variant linked to one of the genes included in the report. Those whose results show they may be at increased risk of a serious health condition will be offered a clinical DNA test through the program’s genetic counseling resource, performed outside of the program at no cost. This clinical DNA test will be performed by Color Health, which provides genetic counseling services to All of Us participants.

Participants may also choose to receive a Report on medicine and your DNA that includes seven genes which are known to affect the way the body processes certain medications. Nearly all participants will learn more about how their bodies process drugs based on these results; however, participants are encouraged to consult a healthcare provider and undergo appropriate clinical trials before considering changes in medications.

“Our participants care about their health and about medical research. We strive to share information with them in a responsible, accessible and impactful way that honors their trust in us and gives them tools to continue learning more about their own health,” said Karriem Watson, DHSc, “This intentional approach gives us a one step closer to promoting health equity for our participants and can serve as a catalyst for change to increase representation in medical research.”

“Returning information in research programs is an ethical choice, but it must be done responsibly and equitably,” said Alicia Zhou, Ph.D., chief scientific officer for Color Health, the Genetic Counseling Resource for the All of Us Research Program. “All of Us is setting a new precedent for longitudinal research programs.”

All of Us works with a consortium of national and community partners in the United States to help reach people and collect DNA samples and data from surveys, physical measurements, electronic health records or EHRs, and wearable devices. The programs Data and research center, Participating Technology Systems CenterY Genetic Counseling Resource worked closely with the program and other partners to develop the return process for health-related genetic results. The programs biobank Y genome centers collaborated to generate the genomic data that informs the personalized results.

The program plans to increase the number of participants invited to receive health-related genetic results throughout 2023, including new participants joining the program.

The Southern All of Us network includes the University of Alabama at Birmingham, Cooper Green Mercy Health Services, Louisiana State University Health Sciences Center, Tulane University, Tuskegee University, Medicine programs UAB School of Medicine Montgomery Intern and Selma Family Medicine, UAB School of Medicine Family Medicine programs Huntsville Regional Medical Campus, University of Mississippi Medical Center, Southern University Health System of Alabama and University Medical Center in Tuscaloosa.

Southern All of Us Network is supported by NIH Funding Grant #1OT2OD026548-01. “All of Us” is a registered service mark of the US Department of Health and Human Services.

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