Recently, Renie Moss sat down to chat with Birmingham Mom Collective about All of Us Research Program. Renie is a mom of two teenagers and works at The University of Alabama at Birmingham in the Department of Genetics. No stranger to working in genetic research, Renie talks to us today as a participant in the All of Us program.
What is All of Us Research Program?
The All of Us Research Program is a large research program from the National Institutes of Health. The goal is to help researchers understand more about why people get sick or stay healthy. All of Us wants one million or more people to join. People who join will share information. This might be about their health, habits, and what it’s like where they live. It might also be about family history and genes. Researchers will use this to do studies. This may help improve health for everyone.
Why did you join the research program?
Renie is “a mom interested in science” and likes the idea of knowing for which diseases and illnesses she and her family might be at risk. She also wants to contribute to the medical research being done to find cures for illnesses and provide better, more individualized treatments.
How has your experience been with All of Us?
Renie has had a very positive experience with the research program. She found the registration easy to understand, so enrolling was a breeze. Renie felt that the program information was “very transparent and honest about the commitment.” She received a great explanation about the enrollment process and how to withdraw. She told us she also “felt very informed about what the study involved, how I may be contacted in the future for future research, and what information I would be getting back, which was really important to me.”
Renie also told us that the information she received about her own health risks and how they will affect her family was very useful. She explained that the information helped her understand if she had any disease risks. This is important to her so that she can determine if she needs to “be on a better health plan.” To Renie, “knowledge is power,” and she wants to know as much as possible so she can prepare and plan for herself and her family.
What are the benefits of participating in the research program?
- Knowing genetic risks for developing potential health conditions is one benefit. When you understand your risk level, you can work with your doctors to create the best prevention plan. Renie did point out that it is “important to know that it doesn’t mean you have cancer [or any disease]. It means you have a high risk for cancer.”
Renie pointed out that many people are interested in knowing these risks, but for those who would rather not know, receiving this information is optional. - Another benefit is “being able to have a precision report of what drugs work best for you.” Pharmacogenomics looks at how your DNA affects the way you respond to drugs. As a participant, the pharmacogenetic report you receive “will be really, really meaningful—maybe not right now, maybe so—but in the future, too.” Understanding how your body will react and respond to certain medications can be very valuable!
- Your participation will help create more effective treatments for years to come. The more researchers know about what makes each of us unique, the more tailored our health care can become. Those who access the All of Us database may one day “find the best ways for people to stay healthy, learn more about certain medical conditions, and learn which medicine is right for each person.”
Who can participate?
In the state of Alabama, participants must be at least 19 years old to participate. The All of Us Research Program aims to engage a community of participants that reflects the diversity of America, including many people who haven’t taken part in medical research before. We welcome participants both healthy and sick, of all backgrounds and walks of life, from all regions across the country. Enrolling is easy! Simply visit the website, download the free app on the Apple App Store or Google Play, or call 833-JOIN-UAB to register by phone. As Renie said, “It’s going to be neat to see all this data come together for our country and all the beautiful people in it!”
