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(DAVIS, Calif.) — Becky Worley is an ABC News correspondent based in California. Here, she documents her experience as a participant in the All of Us Research Program, a National Institutes of Health project that aims to study more than 1 million people from all backgrounds.
It started like most Good Morning America assignments, an idea from our Med Unit about a new study being conducted by the National Institutes of Health.
They pitched the “All of Us” study to our editorial group, and I was asked to bring the story to air. But in the end, it was unlike any story I’ve ever done.
I became a participant and learned a lot about myself and public health in the process.
The National Institute of Health’s All of Us Research Program will collect more data on more types of people than ever before.
There are currently 800,000 people enrolled and they’re hoping to reach a million or more. They’ve collected over four petabytes of data with the goal of broadening our understanding of disease, medicine, and wellness by including data that’s only now becoming feasible to analyze through advanced computing technology and data collection methods.
And perhaps more important than the new tech, they want to break new ground, including a more representative swath of our diverse population, according to Sheri Schully, deputy chief medical and scientific officer for the All of Us Research Program.
“The hope for the impact is that we will be generating evidence on people who have traditionally not been part of biomedical research, so that eventually clinical care can be more personalized for everyone,” she said. “So, that’s not only racial and ethnic minorities, but also sexual gender minorities, rural populations versus urban populations, lower income, lower education attainment, we can gather the evidence to really drive clinical practice for everyone.”
Like every other participant, I signed up online at joinallofus.org, and once instructed to do so, I headed to one of the study’s regional provider sites at the University of California Davis Medical Center.
Over the course of two visits, they took blood samples, gave me a wearable device to track my activity and sleep, checked my weight and body fat percentage, analyzed my microbiome, gathered a saliva sample, clipped my toenails to gather DNA and even snipped a hair sample, which I was told provides information about environmental toxin exposure, and is an optional part of the study.
I filled out pages and pages of information about my daily habits, medical history, and family history. I consented to let the researchers access my medical health records. I wore a glucose monitor and logged everything I ate for a week.
The amount of work that goes into this is not small, but the benefits both for society and me as an individual seem worth it.
The massive amounts of data are anonymized and made available to researchers who apply for access so that they can use this large data set as they develop new medicines, new diagnostic tests, and new treatments for disease. Study organizers say the data will shape public health policy for decades. Because the study is aiming to reach out to a more diverse population, the hope is that new medical discoveries will be less specific to those white, straight, typically abled, suburban/urban, highly educated participants who have historically participated in clinical trials, and will better represent our diverse population.
Scientists from this study have already unearthed more than 275,000,000 previously unreported genetic variants, half of which are from participants of non-European genetic ancestry. This could have huge impacts on personalized medicine in the future that identifies health patterns from genetic markers and a corresponding tailored standard of care.
Beyond the research benefit, each participant gains access to a large amount of data about themselves.
“We’re returning 59 variants and 59 genes where we know there’s action that can be taken if you have a variant and one of those genes,” Schully said. “So for example, we are returning results from the breast cancer genes, BRCA, 1 and 2, [and] those are actually returned through a genetic counselor … so that participants can really get their questions answered by a professional who is used to returning results like this.”
I felt incredibly relieved when my results came back clear; no genetic mutations that I needed to talk about with my doctor. But there was also a report based on my DNA about which medicines I may not process well.
One of the drugs I may not process well is a chemotherapy drug, and it could someday be incredibly helpful to know that I should opt for an alternative if I need cancer care.
The program directors told me that all the data is anonymized for research and is kept in the cloud with serious security.
They also addressed the elephant in the room: They know many underrepresented Americans have a deep distrust of medical research because of so many historical injustices. They said they have a diverse group of advisers and stakeholders who take the issues seriously and ask for participants’ trust, a point emphasized by Schully.
“Trust is something that we put at the very forefront. It’s one of our core values as a program, and we partner with community-based organizations that are within communities where there has been distrust with research,” she said. “We make an effort to make sure that participants are at the very center of everything we do.”
For me, I gained a lot of perspective on my health and the typically inscrutable information in my DNA that may predict future health challenges.
I feel like I can provide important information to my kids about their genetic information, and I know I did something to help science and the future of medicine.
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