The NIH’s All of Us research program returns results related to genetic health to participants


News release

Tuesday, December 13, 2022

The landmark precision medicine effort returns value to research participants by sharing customized and actionable health-related reports.

National Institutes of Health All of us The research program has begun returning health-related DNA results from more than 155,000 participants, with reports detailing participants’ risk for certain health conditions and how their bodies react to certain medications. This is a big milestone for the program, fulfilling its promise to share information and return value to participants.

“Knowledge is power. By returning health-related DNA data to participants, we’re changing the research paradigm, turning it into a two-way street — fueling scientific and personal discovery to help individuals manage their own health,” said Josh Denny, MD, MS, CEO of All of us Research program. “This type of partnership is critical to building trust with our participants and fulfilling our commitment to conducting research that provides meaningful insights for all.”

All of us Partnering with at least 1 million people who reflect the diversity of the United States to accelerate medical discoveries. About 80% All of us Participants represent communities that are historically underrepresented in medical research and make up nearly 50% 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. To date, the program has provided genetic ancestry and traits to more than 175,000 participants and returns approximately 6,000 results each month.

In this first round, participants who have taken a blood sample by returning health-related DNA results and are willing to receive genomic information are being invited individually to receive their results. You can select health-related results if available. Those who choose to receive their results will receive an alert after several weeks when their results are ready. In addition, genetic counselors are available to meet with participants and their family members or health care providers to discuss and interpret their results.

The program Genetic risk reportInformed by recommendations American College of Medical Genetics and Genomics, includes 59 genes and variants associated with serious, medically related health conditions. These genes increase the risk of certain cancers, heart conditions, blood disorders, and more. The program expects that 2-3% of participants will receive a result showing a linked pathogenic or possibly pathogenic variant in one of the genes included in the report. Those whose results show that they are at increased risk for serious health conditions will undergo clinical DNA testing at a genetic counseling source outside of the program. This clinical DNA test is performed by Color Health, which provides genetic counseling services All of us Participants.

Participants can choose to accept a. Drug and your DNA report It includes seven genes known to affect how the body reacts to certain drugs. Almost all participants will learn more about how their bodies process medications based on these results, but participants are advised to consult a health care provider and undergo appropriate clinical testing before considering medication changes.

“Our participants care about their health as well as medical research. We strive to share information with them in a responsible, accessible and impactful way that honors their trust in us and provides them with the tools to continue learning more about their own health,” says Karriem Watson, DHSc., MS, MPH. This intentional focus provides a step forward in advancing health equity for our participants and can serve as a catalyst for change to increase representation in medical research.

“Returning data in research programs is an ethical choice, but it must be done responsibly and fairly,” said Alicia Zhou, Chief Medical Officer of Color Health. A source of genetic counseling b All of us Research program. “All of us It is setting a new precedent for long-term research programs.”

All of us Works with a A combination of national and community partners To help locate people across the United States and collect DNA samples and data from surveys, physical measurements, electronic health records (EHRs) and wearable devices. The program Data and research center, Participatory Technology Systems CenterAnd A source of genetic counseling He has worked closely with the program and other partners to develop processes to return health-related genetic results. The program Biobank And Genome Centers Collaborated to create genomic data that informs personalized outcomes.

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

All of us It is a service mark of the US Department of Health and Human Services (HHS).

In Care Of All of us Research Program: of All of us The research program aims to accelerate health research and medical discovery, personal prevention, treatment and care for us all. The program will collaborate with at least 1 million people who reflect the diversity of the United States to build the largest and most diverse biomedical data resource of its kind. Data enable researchers to integrate scientific findings into biological, environmental, and behavioral factors that influence health and disease. For more information, visit www.ResearchAllofUs.org, www.JoinAllofUs.orgAnd https://www.AllofUs.nih.gov/.

About the National Institutes of Health (NIH):The National Agency for Medical Research consists of 27 institutes and centers and is part of the US Department of Health and Human Services. NIH is the primary federal agency that conducts and supports basic, clinical, and translational medical research, investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

NIH…Transforming Discovery into Health®

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