All of Us Research Program provides participants access to their genetic results
The local cohort, part of the National Institutes of Health (NIH) initiative working to build a diverse community of 1 million or more participants across the United States, is committed to ensuring participants have access to their own information.
Contact: Carrie Simmons
All of Us Research Program, UArizona-Banner
firstname.lastname@example.org | 602-326-9048
January 14, 2021 (PHOENIX) Participants in University of Arizona – Banner Health All of Us Research Program (UArizona-Banner All of Us) are learning more about their genetic and ancestral traits. The local cohort, part of the National Institutes of Health (NIH) initiative working to build a diverse community of 1 million or more participants across the United States, is committed to ensuring participants have access to their own information.
Of the 270,000 participants who have donated biosamples nationwide, nearly 40,000 of them enrolled through the UArizona-Banner All of Us program in Arizona and Northern Colorado. These participants share their electronic health records, biosamples (blood, urine and/or saliva) and take surveys to support researchers’ understanding of how genetics, environment and lifestyle factors affect health outcomes. 82% of participants enrolled in UArizona-Banner All of Us come from communities who are underrepresented in biomedical research, fulfilling one of the program’s core values to promote diversity in research. These participants can now choose to receive information about their genetic ancestry and traits, with health-related results available later. The genetic results include a geographical map of where in the world distant ancestors originated. With a breakdown by percentage, participants can learn more about pieces of their family history that created their unique, individual traits. For Phoenix-area resident Sadiq Patel, the results included a few surprises.
“Despite what I had thought, I am not 100% of Southeast Asian descent,” said Patel. “One of my great grandparents must have been from the Middle East-North Africa region. I didn’t know that. I look forward to seeing what my health-related results show.”
Data is stripped of personal identifiers and made available for research through the All of Us Research Hub. In Arizona, there are 44 researchers currently accessing the Research Workbench where scientists study things like why heart disease is more prominent in Hispanic communities, could cancer outcomes be related to education and income levels, why diabetes has a higher incidence in Asian American communities, and more.
“We’re changing the paradigm for research,” said Josh Denny, M.D., All of Us’s chief executive officer. “Participants are our most important partners in this effort, and we know many of them are eager to get their genetic results and learn about the science they’re making possible. We’re working to provide that valuable information in a responsible way.”
All of Us has developed a robust informed consent process, giving participants information and choice about whether or not to receive results and which results they want to get back. The program also provides access to genetic counselors to help answer questions from participants and their health care providers. All of Us teamed up with a network of awardees across the country to support this work. The program is taking a phased approach to the return of genetic results and will offer additional results over time. As health-related results become available, participants will be offered the option to receive information about how their DNA may affect their body’s response to certain types of medicines.
All of Us plans to begin making genetic data available to researchers in about a year, with strict privacy and security safeguards in place to protect participants’ information. The program seeks to engage researchers from diverse backgrounds to undertake a wide range of studies and learn more about how to tailor care to people’s different needs. Learn more about the national effort and the release of genetic information here.
The University of Arizona-Banner Health Program is supported under the NIH All of Us Research funding award OT2OD026549 with previous awards UG3OD023171-01 and UG3OD023171-01S1.
“All of Us” is a registered service mark of the U.S. Department of Health & Human Services (HHS).
About the All of Us Research Program: The mission of the All of Us Research Program is to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us. The program will partner with one million or more people across the United States to build the most diverse biomedical data resource of its kind, to help researchers gain better insights into the biological, environmental, and behavioral factors that influence health. For more information, visit JoinAllofUs.org and allofus.nih.gov For Arizona news, visit AllofUsAZ.org or Facebook, Instagram, and Twitter @AllofUsAZ
About Banner Health
Headquartered in Arizona, Banner Health is one of the largest nonprofit health care systems in the country. The system owns and operates 30 acute-care hospitals, Banner Health Network, Banner – University Medicine, academic and employed physician groups, long-term care centers, outpatient surgery centers and an array of other services; including Banner Urgent Care, family clinics, home care and hospice services, pharmacies and a nursing registry. Banner Health is in six states: Arizona, California, Colorado, Nebraska, Nevada and Wyoming. For more information, visit bannerhealth.com.
About the University of Arizona Health Sciences
The UArizona Health Sciences is the statewide leader in biomedical research and health professions training. UArizona Health Sciences includes the Colleges of Medicine (Tucson and Phoenix), Nursing, Pharmacy, and the Mel and Enid Zuckerman College of Public Health, with main campus locations in Tucson and the Phoenix Biomedical Campus in downtown Phoenix. From these vantage points, Health Sciences reaches across the state of Arizona, the greater Southwest and around the world to provide next-generation education, research and outreach. A major economic engine, Health Sciences employs nearly 5,000 people, has approximately 4,000 students and 900 faculty members, and garners $200 million in research grants and contracts annually. For more information: uahs.arizona.edu (Follow us: Facebook | Twitter | YouTube | LinkedIn | Instagram).