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The opportunity to learn what’s in your genes is one appealing aspect of participating in the All of Us Research Program. When you join the program, you can share a blood or saliva sample. That sample is processed at our biobank. And it’s what All of Us uses to decode your DNA.
We can use DNA to tell you a little about where your family might have come from. We can also tell you about some traits you might have — like your taste for cilantro. We can even tell you a bit about how you might respond to certain medicines. Your personalized DNA results are just for you. We never share them with researchers.
But your DNA can reveal much more. The main reason we ask you to share your DNA is to advance science. Researchers can use genetic data from hundreds of thousands of All of Us participants — to make new discoveries about health and disease.
To do all of this, researchers need to sequence your genome. But what does that mean? And what do researchers do with these genome sequences?
The Human Genome — Our Story in DNA
The chemical makeup of DNA is represented by strings of letters. All those letters together make up your genome. If we think about a genome as a book, the way the DNA-letters are arranged determines the story.
Stories are broken into sections: chapters, paragraphs, sentences, words, and letters. The same goes for your genome. Breaking it into smaller chunks — often individual genes — is how researchers study it.
One way that’s done is through whole-genome sequencing. This technique lets researchers see the sequence of DNA letters within those genes, then read the genome — the book that is all about you.
The first human genome was sequenced more than 20 years ago. That was part of the Human Genome Project. The project took two decades and cost several billion dollars.
“But then technology changed. And prices changed. Everything changed,” says Anji Musick, Ph.D., M.P.H. Dr. Musick is the director of Scientific Data Strategy at All of Us.
Sequencing became faster and cheaper. That means more genomes can be studied. Right now, in fact, All of Us has more than 245,000 whole-genome sequences available for research, with more on the way — all thanks to participants like you! That much diverse genetic data will help us better understand health and disease.
The Clues to Health in (Not Just) Your DNA
Sometimes books and stories have mistakes in them. They’re called typos. They can make a story more confusing.
Here’s an example:
You’re reading a story where your favorite character is walking under cloudy skies. It starts to pain, so she opens her umbrella.
Wait — what? Pain? What does an umbrella do for “pain”?
Turns out the author meant “rain” — like raindrops. The “p,” which made the word “pain” instead, was a typo.
These kinds of errors exist in your genome “book.” Sometimes our bodies don’t notice an error, just like we don’t always notice a typo in a book. But some typos can change the whole story. That’s what gene variants are — “typos” in your genome.
Researchers can look at whole-genome sequences to find these variants. When they study DNA sequences from many people, they can see if a variant occurs in people with the same health conditions based on data from their electronic health records. That’s how researchers can link genes to health.
More is More
How is that done? Let’s go through an example.
Let’s say researchers see a group of people who all have the same gene variant. That information is not very helpful on its own.
Now, let’s add health records to the genetic data. Maybe researchers find that the people with the variant have diabetes and high blood sugar levels. That could mean that the gene variant makes it harder for your body to manage your blood sugar and raises your risk for diabetes.
This is why All of Us asks for so much data, and not just your DNA. Any piece of information you are willing to share can give us a richer understanding of health. And having all this information from lots of different people helps even more.
Every person has a unique story. The more stories we “read,” the better we understand the themes we all share. “That gets right at the heart of what precision medicine aims to do,” says Dr. Musick.
Thank you for sharing your story, however much of it you’ve shared. These stories are helping us understand what all of us need for better health.
More than 780,000 participants who have completed the consent process.
More than 535,000 participants fully enrolled.*
More than 9,500 research projects are using All of Us data.
*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine or saliva samples.
Laura Germine, Ph.D., studies how brains work and how thinking affects behavior. Her research focuses on getting diverse groups of participants to engage in cognitive research. And making brain tests easy to access.
Dr. Germine partnered with All of Us on our Exploring the Mind activity, which launched last year. Exploring the Mind uses everyday tasks to test how brains function. The information we gather from the tasks can tell us more about mental health and illnesses. You can complete Exploring the Mind every month to see how your results change over time.
All of Us developed Exploring the Mind with the National Institute of Mental Health and The Many Brains Project, a nonprofit Dr. Germine directs. Usually when you play brain games for research, you do it in person, in a lab. Exploring the Mind lets All of Us participants engage with digital activities in the comfort of their own homes.
In 2005, Dr. Germine created TestMyBrain, one of the world’s first online brain laboratories. Some 3.3 million research participants have visited it. Data from the site’s many cognitive tests have led to new findings in brain science.
We recently sat down with Dr. Germine to learn more about her participant-focused approach to research.
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All of Us: TestMyBrain opened up brain research to many people. What inspired you to do it?
Laura Germine: Almost 20 years ago I was studying face recognition. That’s our ability to tell who someone is and how they’re feeling just by looking at their face. I was trying to create tools that many people could use but were also useful for researchers.
Around 2005 we started creating these tools and putting them on the web. We realized we could build versions of tests that can work in web browsers. Then someone in China, Brazil, or Australia can take them.
So we started creating cognitive tests, personality tests, and tests for mental health disorders like anxiety and depression. The first community where they went viral were people with autism spectrum disorder. They were looking for resources to better understand their condition, which is incredibly diverse.
All of Us: What did that experience teach you?
Laura Germine: Working with people who have face blindness early in my career taught me how much insight into a disorder patients can have. The Internet brought together all these people who couldn’t recognize faces or interpret expressions. It created a community that hadn’t had a voice before. And this group was hugely important to science. The participants taught us a lot about the things to look for in our research.
All of Us: Last year All of Us rolled out Exploring the Mind, which the Many Brains Project helped develop. Can you tell us about that project?
Laura Germine: We have a unique approach: In every single test we develop, we start from the public web. We take things that have been done in a more traditional way and create versions that can be accessed on the web by everyday people.
Working with All of Us, we selected tests that could be accessed easily and reliably. And we listened to participants. If anyone told us they really didn’t like an activity, then it was cut from further development.
Listening to participants also means understanding their perspective. For example, the average cognitive scientist thinks that a 20-minute activity is brief. But on the web, 20 minutes is a huge chunk of time to be doing just one activity. In fact, we’ve found that two minutes is considered good. Three minutes is pushing it. Four or five minutes — forget about it!
The activities that made it to All of Us were ones that people were able to fit into their busy lives, during small breaks in their day. I think that was important for this project, which is national but takes place in everyone’s house.
All of Us: What was it like working with the research program?
Laura Germine: What’s really distinct about the All of Us Research Program is its true commitment to making tools and studies that are accessible and engaging. It was there from the very beginning. And that’s really refreshing.
A robust and inclusive science means making sure tests don’t have barriers. And that nothing is making people feel like their voices aren’t being heard.
All of Us: Any final thoughts for readers?
Laura Germine: I would say that when you’re part of a big national research study, it’s easy to think that you as an individual don’t have a lot to say. But some of the most important advances we’ve had have been informed by just an email from a participant — someone giving us feedback.
So I would encourage participants to share feedback at every opportunity. And to never feel shy about doing that. Because often it’s those insights from everyday people that really change science. That moves it forward in ways that we wouldn’t be able to do from the inside.
Scientists and researchers don’t have all the insights. You do.
This interview has been edited and condensed for clarity and brevity.
More than half (50.8%) of all people in the world are women. Yet women haven’t always been included in medicine and medical research.
The All of Us Research Program is helping to change that.
March is Women’s History Month. So it’s a perfect time to talk about women’s health — and how All of Us is adding to what we know.
The Historic Barriers to Women in Health Research
Until the 1980s, very few women worked in science and medicine. That meant that women’s voices were rarely heard in decisions about health and medical research. But researchers also left women out of studies on purpose. Some of this could be tied to societal ideas around what was thought as proper for a woman to do and be.
Women and their bodies were also seen as too different and difficult to understand. This is because many women deal with changes in their bodies around pregnancy and fertility.
Researchers often saw these differences as difficult to manage within their studies. Many researchers were unlikely to include women in studies that were not focused on “women’s issues.”
Researchers also didn’t want to harm a person who was pregnant. Very little was (and still is) known about how drugs can affect a fetus. This caution led researchers to exclude pregnant people. They also excluded people who could become pregnant. The Food and Drug Administration even had a policy excluding these groups of people from early clinical drug trials.
Together, these factors have led to the default in health care being male. There is less data on women’s health than men’s. And that has affected all women — across their lifespans, and their different life experiences.
Understanding Women’s Health Means Better Health — For Everyone
Researchers today are trying to make sure more women are part of medical research. The National Institutes of Health (NIH) requires researchers to include women in clinical research studies. If women are not going to be included, a specific reason is needed. They can’t be left out just because the study would be easier to do.
This has led to more discoveries in women’s health. There’s more research on conditions that more commonly affect women than men. For example, researchers know much more about breast cancer.
Including women also helps everyone. Researchers better understand conditions that can affect all people, regardless of their sex at birth. For example, many conditions can have different symptoms in women than men. These include heart attacks, ADHD, and depression. Knowing these differences has led to better screenings for everyone.
Women’s Health in All of Us
Researchers are using All of Us data to study women’s health right now. Some are studies of general conditions, with women as the focus. Those conditions include dermatitis, HIV, and lupus. These conditions can affect everyone but may have different symptoms in women.
Researchers are also studying data from women who identify with different racial and ethnic groups. For example, the effects of discrimination on women are being examined. And researchers are studying how well women from different racial or ethnic groups can access health care.
You can see more projects on women’s health by going to our Research Projects Directory.
We’ve come a long way in women’s health. Our participants and the women who are part of All of Us are helping us do even more.
Working at a mobile vision clinic opened Sally Liu Baxter’s eyes. It’s where she realized what she wanted to do with her life.
Dr. Baxter, M.D., MSc., is a physician–scientist and an All of Us collaborator. She’s also an assistant professor of ophthalmology at the University of California, San Diego (UCSD).
But back then, during her internship at the eye clinic, she was an undergrad at Duke University. Her internship took her to underserved communities in Southern California. The clinic (which was run by UCSD) gave vision screenings to children in pre-K through elementary school. Many didn’t have access to health care.
“Every day we were seeing kids who were … falling behind because of a basic need for glasses,” Dr. Baxter said. “They couldn’t see the blackboard or the front of the classroom.”
The mobile clinic made a big impact wherever it went. It had a big effect on Dr. Baxter too.
“[That work] made it real for me,” Dr. Baxter said. “There really wasn’t a level playing field. There was something tangible we could fix.”
The experience motivated her to study medicine, public health, and ophthalmology. Her focus was medical research and bioinformatics. It’s a field that uses computer science, math, physics, and biology to study eye diseases.
The Eyes Have It
Dr. Baxter’s research looks at risks for vision loss and glaucoma. Glaucoma is a leading cause of blindness in the United States. Nearly 3 million Americans have the disease. There are few early warning signs. But Dr. Baxter can analyze them and use them to predict risks.
The All of Us Researcher Workbench helps her, too. Dr. Baxter uses its huge dataset to predict who might develop advanced glaucoma. Those who do often require surgery.
Dr. Baxter has also used the database to study how high blood pressure, diabetes, and heart disease increase the risk for more serious glaucoma.
Dr. Baxter’s research earned her an NIH Director’s Early Independence Award in 2020.
One of her studies after that looked at electronic health record (EHR) data from more than 1,200 All of Us participants with glaucoma. Dr. Baxter used that data to train a computer to predict who would need eye surgery. The computer was right 80% to 99% of the time.
In 2021, Dr. Baxter’s paper was one of the first to be published using All of Us data.
“The power of numbers,” Dr. Baxter says, “is huge.”
Family History of Higher Education
Dr. Baxter comes from a long line of academics. Her relatives were among the first women in China to get college degrees. Dr. Baxter was the first in her family to become a practicing physician.
Her parents immigrated to the United States in the early 1980s. They were grad students finishing their engineering degrees. Dr. Baxter was born in rural Ohio in 1987. She spent her early years in Pennsylvania, then Indiana. She and her parents moved to San Diego just before eighth grade.
Her grandfather Guangfu Zhou was also a big influence. He lived with Dr. Baxter’s family for several years in the United States. In China, he was an English professor. He read Chinese poetry to Dr. Baxter when she was young. That’s how she grew to love languages. Today she speaks Mandarin and conversational Spanish.
Science camp was also a key influence. In high school, Dr. Baxter spent four weeks at the California State Summer School for Mathematics & Science. She worked on experiments there and studied with geneticist and neuroscientist Fred Gage. He works at the Salk Institute for Biological Studies and is famous for discovering stem cells in the adult human brain.
“I just knew him as the expert in my biology book in high school,” Dr. Baxter said. “Then I was in his lab studying with him.”
From that time on, Dr. Baxter was hooked on science. She was also sure of her career path.
Medicine and Marriage and Mentors
After she graduated from Duke she moved to London. She was pursuing a master’s degree in public health, as a Marshall Scholar. That’s where she met her future husband, Michael Baxter. He was a Rotary Scholar, also studying public health. They both had applied to medical school in the United States. Dr. Baxter completed her medical degree at the University of Pennsylvania, in Philadelphia. Her husband finished at Johns Hopkins School of Medicine, in Baltimore.
They married at Michael’s alma mater, the U.S. Naval Academy in Annapolis, Maryland. The couple had three children while completing their medical degrees and residencies. Dr. Baxter’s mother, Hong Dai, and her mother-in-law, Joan Baxter, both helped out.
Dr. Baxter completed her residency in ophthalmology and a fellowship in biomedical informatics at UCSD. She credits her supportive family and mentors.
Mentor Robert N. Weinreb, M.D., a chair and distinguished professor of ophthalmology at UCSD, continues to offer advice and support. He mentored Dr. Baxter throughout her residency, fellowship, and early years at UCSD. He told her not to take manuscript rejections personally. He also advised her to persist with grant proposals.
“He helped me build a sense of resiliency,” Dr. Baxter said.
Dr. Weinreb says Dr. Baxter’s passion for learning and growth impressed him. “She … tackles challenges head-on and always embraces opportunities to stretch beyond her comfort zone.”
Paying It Forward
Now Dr. Baxter is passing on the lessons she learned.
“I’m trying to pay it forward,” she said. She advises and helps dozens of early career researchers in her lab at UCSD.
Dr. Baxter is also an All of Us participant. That gives her firsthand knowledge of how sharing health information can help researchers.
“The incredible size and scope of All of Us [data]” also helps explain why there are disparities in health care. And how to make care better for everybody.
In the future, Dr. Baxter hopes to expand data and research on eye diseases.
“I really hope the research can move forward toward improving clinical care,” she said. “There is so much progress we can make. This is just the beginning.”
The All of Us Journey Exhibits
All of Us is back on the road!
The All of Us Journey Exhibits help visitors from different communities learn about precision medicine research. With interactive stations designed to engage visitors of all ages, it’s a great chance to see the power of participation in health research firsthand. You can even sign up to be an All of Us participant if you choose to.
Here are some of the places All of Us Journey vehicles will be in the coming months, and when they will be there:
To learn more about the continuing All of Us Journey, visit our events page.
Celebrating 10,000 Researchers
This week, we reached another milestone. More than 10,000 researchers are now using All of Us data!
In many ways, the number of researchers is as important as the number of participants. You generously share your health information. All of Us researchers use data shared by thousands of participants like you to better understand health and disease. Reaching 10,000 researchers so quickly shows the power of All of Us to improve the future of health.
All of Us researchers are already shaping how we understand health and disease. Read about research made possible by your generous participation and our growing community researchers. As always, thank you for being part of All of Us.
Child Enrollment is Coming Soon to the All of Us Research Program
One of our core values is “participation is open to all.” That includes people of all ages. When children participate in All of Us, they can help improve health from infancy through adulthood.
We recently took important baby steps toward child enrollment. We started engaging with families with children 4 years old and younger at a few partner locations.
Now, we’re taking a pause to review these interactions. We want to see what went well and how we can improve for the future. What we learn will help us develop a thoughtful plan and create the best experience for families as we gradually begin to enroll more children.
We look forward to sharing more exciting news in the coming months. Stay tuned!
Recent Research Highlights
Check out our March Research Highlight!
A new study found that people of African descent are at higher risk of kidney disease if they have a certain genetic variant. Genetic data from All of Us helped researchers find another variant. This variant lowered kidney disease risk. And it lowered risk even if the high-risk variant was also present. This research could help find new treatments for kidney disease.
You can also read our February highlight. Researchers used Fitbit data from All of Us participants to learn how many steps are needed to lower diabetes risk.