The Federal Dataset That Saved My Life

Rachele Peterson explains her research’s personal impact.  

I spent two decades in clinical research, including 10 years building a national research infrastructure, before I became a patient whose life was saved by it.

Biomedical research operates largely in silos: eligibility criteria are narrow, study protocols require too many daytime visits during work hours, datasets are short-term, and records rarely cross institutional lines.

When the National Institutes of Health (NIH) launched the All of Us Research Program (All of Us), the goal was explicit: disrupt the status quo. The program was designed from day one around an important core value: to serve as a catalyst for positive change in research. It set out to create a new paradigm by doing things differently, often taking the hard, unprecedented path at scale so it would ultimately be easier for others to follow.

All of Us engineered a digital-first approach to enrollment, built detailed, interactive virtual consents with videos and quizzes, harmonized electronic health records across more than 60 health systems onto a cloud-based platform for researchers, funded intentional community engagement, and committed to returning actionable genomic results back to participants.

Believing deeply in the mission, I enrolled as a participant myself. I opted in to receive my health-related DNA results, expecting little.

In 2022, during a phone appointment to receive those results, the genetic counselor shared unexpected news: my sequencing data flagged a BRCA2 mutation.

That single data point changed my entire medical trajectory. Until that call, breast cancer wasn’t on my radar. I had never had a mammogram. I had no reason to think of myself as someone with an elevated risk.

Learning I carried a BRCA2 mutation changed that immediately. My doctors put me on a high-risk screening protocol that included annual mammography and breast MRI. That’s important because mammography can miss some breast cancers, while MRI can detect cancers that mammography does not.

In 2026, that additional surveillance paid off: doctors detected stage 0 ductal carcinoma in situ, the earliest form of breast cancer.

Because it was caught so early, I didn’t need chemotherapy or radiation. I underwent surgery. A month later, I am back on my feet. Today, instead of enduring exhausting cancer treatments, I get to focus on what matters most: guiding my high school senior through her college applications and planning upcoming family vacations.

I am profoundly, legitimately grateful to be here. To be alive and healthy.

Cumulatively, All of Us offered health-related DNA results to over 277,000 participants, identifying 5,620-plus individuals with potentially lifesaving genetic variants and more than 158,000 with pharmacogenomic insights about how their bodies process medicines differently.

I am one of those 5,620.

Because of reductions in program funding, All of Us is regrettably no longer able to offer health-related DNA results to participants at this time. The program is exploring sustainable approaches to returning different kinds of health information to participants in the future.

In public sector science, we look at the return on investment as measured through scientific publications, new clinical guidelines, and other novel discoveries. But it can also be measured in living mothers, daughters, and families.

To the teams at NIH and All of Us: thank you for saving my life.

Note: The views expressed here are my own and written strictly in a personal capacity.

Whether you are a patient, survivor, caregiver, or loved one touched by cancer, your story can have an enormous impact. You can provide hope and inspiration to someone recently diagnosed with cancer or a patient undergoing therapy.