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Precision medicine focuses on how a person’s genetics, lifestyle and environment influence their specific health care needs. While a person can inherit a higher risk of cancer or other diseases, there may be steps to take that offset or minimize that risk.
As unusual as it may sounds, being more precise requires a broad approach: Access to personalized data from a large, diverse pool of participants will help researchers identify specific trends and fill unmet healthcare needs.
That’s why the National Institute of Health launched the All of Us in 2017, embarking on the ambitious goal of enrolling at least 1 million people to provide biological samples as well as demographic and lifestyle information to help researchers across the health care spectrum.
“All of Us has partnered with over half a million participants already, and that’s very exciting,” said Dr. Elizabeth Burnside, deputy executive director of the UW-Madison Institute for Clinical and Translational Research and radiologist with the UW Health Breast Center.
Burnside co-leads the UW-based initiatives of All of Us.
All of Us is free and open anyone over 18 living in the U.S. Participants are asked for permission to share their electronic health record, submit biological samples for lab and DNA tests, and answer a series of surveys on topics such as patient demographics, lifestyle, health care access and family medical history.
This information is stored in a secured database that is accessible to authorized researchers all over the world. To ensure privacy, the participant’s name and other identifying information is removed from the records.
Participants also can decide their level of involvement with the program, including if they wish to see their DNA test results. Burnside said the test shows if participants have genetic risk factors for certain diseases, as well as how their body may process certain types of medications.
Dr. Howard Bailey, director of UW Carbone, is hopeful the work done by All of Us can help advance the understanding of genetic cancer risk factors and how best to translate those into effective preventive care and screening protocols.
Bailey also is enrolled as a participant in All of Us: his family has a genetic risk factor of hemochromatosis, a disorder where the body builds up harmful levels of iron that can lead to liver damage and other serious health issues. He wants to do his part to support research that can benefit future generations of his family.
“I think there is just incredible potential to understanding our health and future health through All of Us,” Bailey said. “I envision a day where, with this sort of testing, that people will have a much better sense of what illnesses they are most at risk for, and thus what measures they can do to lessen their risk.”
Addressing health disparities
Annie Weatherby-Flowers, of Madison, chose to enroll in All of Us after a conversation with her rheumatologist. She and several other family members have autoimmune disorders, so she wanted to be more proactive in research that could benefit her children and grandchildren.
Weatherby-Flowers is also a member of the All of Us Community Advisory Board. She notes that there is a brutal history of medical exploitation of African Americans, which contributes to the lack of modern research representation. She appreciates that All of Us lets participants decide what they’re comfortable sharing.
“We decide how much, how long and how deep we get involved,” Weatherby-Flowers said of All of Us. “If we’re not involved in the research, if we’re not involved in driving that narrative, then we find ourselves stuck in these places where we are dying because of lack of knowledge on our behalf, and also lack of our involvement in research.”
Weatherby-Flowers was surprised to learn from her DNA test that she had a genetic risk factor for Paget’s disease of bone, which interferes with the body’s ability to replenish bone tissue. The disease is more prevalent in people of European descent. She said her test results made her feel more empowered in her own health choices.
Burnside said a key goal of All of Us is identifying and addressing health disparities among underrepresented populations.
“One of the things that is so important is to build and sustain a relationship with communities that have been historically underrepresented in this type of research. Biomedical research hasn’t treated many communities fairly in the past, so we need to make sure we earn that trust again and again, every day,” she said. “The All of Us Research Program holds inclusivity is a guiding value and commitment, because the treatments that are being developed can’t help individuals who aren’t included in the research.”