From genealogy to genetics, BWH patient Margo Blackwell-Moquin says she has long been curious about her roots. Recently, she has been keenly interested in what her unique makeup means for her health.
“I really believe knowledge is power, and not knowing is not healthy. You can’t do anything preventive if you don’t know,” said Blackwell-Moquin. “It’s really important that we all educate ourselves about our health.”
When she learned about the All of Us Research Program – which seeks to accelerate research and medical breakthroughs that will enable individualized prevention, treatment and care – Blackwell-Moquin was immediately interested and enrolled at the Brigham. The program, part of the National Institutes of Health’s Precision Medicine Initiative, has a goal of enrolling one million or more people across the country to share their health data and samples to build the largest health database of its kind.
Partners HealthCare was selected to take part with Boston Medical Center in All of Us, making it one of several participating organizations nationwide. The BWH program, led by Elizabeth Karlson, MD, and Scott Weiss, MD, and co-investigators Cheryl Clark, MD, ScD, and Robert Green, MD, MPH, is currently enrolling participants in its pilot phase prior to All of Us’ nationwide launch.
Data that researchers obtain from volunteers – including physical measurements, medical history, and blood and urine samples – will be used to conduct thousands of studies in multiple disease areas. In addition to having the opportunity to help fuel the next medical breakthrough, some participants receive research results.
“This project will help researchers learn how individual lifestyle, environmental and genetic factors work together to affect our health so that all of us can learn how to prevent and treat disease,” Karlson said.
A cornerstone of the program is its emphasis on enrolling participants who reflect the rich diversity of the U.S., especially those who have historically been underrepresented in research, Clark explained.
“Too often, as we think about medical breakthroughs and research, the information we rely on is not always tailored to the needs of diverse communities – that can include social factors such as race, ethnicity, sexual orientation or gender identity,” Clark said. “We want to make sure the treatments we develop really do reflect the needs of every person, which makes it so important that people from all walks of life participate.”
Blackwell-Moquin, who is African-American, said she was moved by the program’s mission to improve representation in medical research and care. By enrolling in All of Us, she hopes to learn more about her own health while also supporting an effort that could uncover important information that would benefit future generations.
“I don’t know a lot of my medical family history. Sometimes there’s information that isn’t discussed in families, or the person who does know has passed on,” Blackwell-Moquin said. “And just because it’s not in your family history doesn’t mean it can’t happen to you. Doctors can’t order every test under the sun. But if African-Americans can learn, for example, that some are prone to certain diseases or disproportionately affected by specific issues, that is so important.”