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An exciting aspect of the All of Us Research Program is learning about what is in our DNA. When All of Us begins to share health-related results, what details might you learn? All of Us will share results with you about genes connected to diseases that can be inherited. Other results will be about signs in our DNA that tell us how we respond to medication.
Everyone carries different gene variants. These variations are changes to a gene’s DNA that play out in distinct ways. Most gene variants are harmless. They can affect the way that we look, impact other traits (like what type of ear wax we have), or have no effect at all. Some helpful gene variants can lower your risk of getting certain diseases.
But some gene variants can cause health problems now or in the future. Having these variants does not mean that you will get a disease or that you have a disease now. It means that you may have a higher risk of getting it than other people who do not have the variation.
The health-related genes All of Us plans to look at are from a list of 59 genes put together by the American College of Medical Genetics and Genomics (ACMG).
Variations in these genes are connected to certain cancers, connective tissue, and heart and metabolic health. ACMG made a list of these genes and health conditions because treatments already exist for them. The list might change, depending on what we learn along the way. We can change which genes we look at if the list changes.
Marfan syndrome is one example of a health condition caused by a gene variation on the ACMG list. Marfan affects the connective tissue. This causes people who have the condition to grow tall, skinny, and a little stretchy. (Some scientists suspect that Abraham Lincoln had Marfan.) The variation might also affect the heart, which can be treated. Being aware of these variations can help people with Marfan live a regular lifespan.
Many of the diseases are rare. But the Marfan example shows why it’s important to find out if you have these variations. If you know you are at risk of a health condition, you can work with a doctor to take preventive action.
Learning about your DNA from All of Us can be the first step in that process. But remember, All of Us is a research program, not a health care service. You should always confirm results you receive from All of Us with a clinical test. And you should always talk with a doctor before you change your care.
If this sounds complex, there’s help. You will be able to talk to an All of Us genetic counselor about your DNA results. The genetic counselor can help you understand what your results might mean. They can also recommend what you should do next with your results.
Stay tuned to learn more about your health-related results and your genes!
# of participants who have completed at least one COPE survey
# of participants who have completed the consent process
# of participants fully enrolled*
*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine or saliva samples.
When the pandemic began, All of Us paused all in-person enrollment and other live events. We are just starting to open up again in places where it is safe. If your area hasn’t started in-person enrollment yet, you can still sign up and participate online at JoinAllofUs.org.
In 2018, Asraa Alhawli traveled from Dearborn, Michigan—a city near Detroit that has the largest percentage of Arab Americans in the United States—to Washington, D.C. She was on her way to a health summit held by the organization she works for, the Arab Community Center for Economic and Social Services (ACCESS). At the summit, Asraa heard about All of Us. It piqued her interest right away, partly because All of Us includes the term “Middle Eastern and North African (MENA)” as a race/ethnicity category that participants can choose.
“Off the bat, I felt seen, and I felt included,” Asraa says. She was surprised to find out that ACCESS was already an All of Us partner. And it wasn’t until later, when she heard about the program again, that she decided to learn more and get involved.
Now Asraa is ACCESS’s program coordinator for All of Us. ACCESS helps people in the Detroit area learn about, join, and stay involved in the program. Asraa’s experience learning about All of Us led to some changes in ACCESS’s approach. First, ACCESS began holding lunch-and-learn sessions to make sure its staff members know about the program. That way, staff can spread the word when community members come in for health care, educational programs, help with food and housing, or other services. Staff members tell their clients if an All of Us event is coming up, or they hand out flyers. That’s important, because—like Asraa—people might need to hear about All of Us more than once before they think about joining. “You’re not always going to get people to show interest in the program from the first interaction,” Asraa says.
ACCESS found other ways to make All of Us more familiar to community members, too. “We made sure that we were going out there in the community time and time again,” says Asraa. “We would go to mosques every Friday and show our faces and be ready to answer questions. That really helped.”
That kind of activity is on hold during the pandemic. But ACCESS is still getting the word out about All of Us. Its latest venture is holding remote movie nights. Viewers gather—virtually—to watch a movie and then talk about research and All of Us. So far, ACCESS members and friends have watched “The Immortal Life of Henrietta Lacks” and “Three Identical Strangers.” Both films involve health research. “We chose those movies as a stepping stone into talking about All of Us,” says Asraa. The screenings are a fun way to connect with people without too much Zoom fatigue.
Connecting All of Us to community members is important to ACCESS. Arab Americans have not always been included in research, but All of Us is working to change that. “Our health needs and risks have been poorly documented,” says Asraa. “With All of Us, we finally felt like our voices are being heard and we were being recognized.”
Hold your own movie night!
“The Immortal Life of Henrietta Lacks” tells the story of a Black woman whose cancer cells were removed without her knowledge during treatment. Doctors discovered that the cells they had removed were unusually easy to keep alive. For decades, researchers have used the cells to make discoveries about health. The story reminds us how important it is to conduct research ethically to ensure that participants understand their role and to earn the trust of those who contribute.
“Three Identical Strangers” is a documentary about triplets who were adopted into different families. The three brothers found each other 19 years later.
You can watch both movies at home through a variety of streaming services. Have your own personal movie night, or make plans for a virtual discussion with friends. Popcorn is optional!
Want to keep learning about research?
If you’re cooking more these days, you’re not alone. Surveys have found that many people have fired up the oven, stove, or grill more often since the beginning of the COVID-19 pandemic. Some people may have more time now that they’re working from home and not commuting. Some are rediscovering the joy of cooking. And others are gaining new confidence in the kitchen.
Whatever your skill level, cooking at home is a great way to eat healthier. You can control what’s in your food and your portion size more easily than you can at a restaurant. And of course, eating healthy is one of the best things you can do. It can help prevent or manage certain health conditions, like diabetes. And although there’s no magic food to boost your immune system, good nutrition is important for keeping your immune system strong.
We still have a lot to learn about how food affects health. No diet is perfect for everyone. The National Institutes of Health’s (NIH) upcoming Nutrition for Precision Health program will study the different ways foods affect different people, and All of Us will be part of it. Learn more in Science magazine.
March is National Nutrition Month, so it’s a good time to check in on your eating habits. One way to do that is by taking this quiz from MyPlate.gov. After you take the quiz, the website—from the U.S. Department of Agriculture—gives you personalized tips. (For example, if you’re spending more time at home, you might also be snacking more. Check out these tips for healthy snacking.)
Some more ideas to inspire your next kitchen creation:
• Sign up for a virtual cooking class.
• Pick a new recipe—or an old favorite—and make it on a video chat with friends or family.
• Check out some heart-healthy recipes from the National Heart, Lung, and Blood Institute and the Million Hearts® initiative.
• Visit MyPlate every month to see the monthly recipe (and what’s trending).
Collecting Saliva for DNA
Would you do a spit-take if you knew you could spit into a tube for All of Us?
While waiting for the opportunity to provide a blood sample, some participants have been invited to order a saliva collection kit over the past few months. This lets you donate a spit sample to All of Us from the comfort of your own home. The kit includes a blue box filled with a tube, instructions, and a prepaid mailing label to return your biosample.
Spit holds just as much DNA as blood, ounce for ounce, making it a good alternative for DNA. But just for DNA—blood samples contain other information about your health.
Saliva and blood are both important to All of Us, so we may ask you to donate blood even if you are also asked to share your spit. All of Us might invite you to visit your health care provider organization (HPO), if you can do so safely, or you might get an invitation to order a kit through the mail. Keep an eye out or log in to your All of Us account to see if an invitation is waiting for you!
You Are Invited to a Summit on Black Health
Sponsored by the National Library of Medicine, the Queens Public Library, and All of Us, the 24-Hour Black Health and Healing Virtual Summit addressed different health issues in the Black community. It was held in early February. It featured talks by many speakers, including:
Our own Kolbi Brown wrapped up the event with a talk about including people from all walks of life. He is the program director at the New York City Health + Hospitals/Harlem All of Us site.
Missed this event? No worries. Watch the summit videos here (free registration is required).
Come Work With All of Us
Do you get excited thinking about the future of health research? Do you love working with people from all walks of life?
All of Us is looking for active participants for paid committee positions. A spot on an All of Us committee might be just the thing for you!
The committees meet virtually, an hour at a time a few times a month. You are eligible to nominate yourself if you:
For more information or to nominate yourself, click here. Questions? Please contact Angelica Alton at [email protected].
UNITE to End Racism in Research
NIH has started a new initiative, UNITE, that will pinpoint and root out racism embedded in research. At All of Us, we value the fact that our participants reflect the rich diversity of the country. We want to ensure the same is true of the researchers who make use of the valuable data our participant-partners —you!—provide. Read more from All of Us CEO Joshua Denny, M.D., here.
The public and other organizations are invited to give feedback on how NIH is doing on equity and inclusion. Comments are open through April 9, 2021, on the NIH website. Responses will be publicly available.
At All of Us, we are committed to action that addresses diversity, equity, inclusion, and accessibility. As a first step, we are recruiting for a director of health equity. Read more on the vacant position in the announcement here.