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Today, it feels like medical research has never been more important. That’s why we’re so thankful for you. You have helped lay the foundation for the future of All of Us. There is much more coming your way from All of Us. We want to let you know what to expect.
Here’s an overview of what’s happening now, what’s coming up, and what activities you might see when you log in to your All of Us account in the next few months.
Because All of Us has such a large, diverse group of participants from all around the United States, you have a unique opportunity to support research about COVID-19, the disease caused by the novel coronavirus. One way to do that is through our monthly COVID-19 Participant Experience (COPE) survey. You may have already heard about the COPE survey. You may even have taken it in May or June—or both.
The COPE survey is a way for All of Us participants to teach researchers about participant experiences during the COVID-19 pandemic. Researchers can learn how these experiences affect physical and mental health. The survey includes questions about social distancing, general well-being, mood, stress, physical activity, and more.
In July, we’ll ask you to complete the COPE survey again. We hope you’ll take it every month for as long as the pandemic lasts. By taking it every month, you provide valuable information about how your experience is changing (or not changing) over time. Even if you miss a month, you can still take the survey the next month.
If you haven’t taken the June survey yet, there’s still time! To get started, log in to your All of Us account and make sure you’ve completed the survey called The Basics.
Your answers matter. We are so thankful for your time and input.
Analyzing participants’ genomes, or DNA, is an important part of our efforts to gather data. Studying DNA and other information from All of Us participants could help researchers:
We’ll be in touch soon with more information about what this analysis means for you and how to participate. If you joined on or after April 21, 2020, you saw this information about DNA analysis when you signed up, so you won’t need to do anything new. If you joined before that, we’ll soon ask you to watch some short videos about what DNA means for you as an All of Us participant. This is one way of making sure we’re being transparent with you. And if you are one of the very early participants who helped us test this program out before it launched nationally, we’ll also ask you to sign an updated consent form if you want researchers to be able to study your DNA.
After we start analyzing DNA, we’ll also be able to start checking for DNA results that we can return to participants who want them. You can decide whether you want to get results. We will add a new consent—the Consent to Receive DNA Results—to your All of Us account soon. The consent will let you tell us whether you want to get your results in the future when they’re ready. If you see this in your account, go ahead and complete it. But don’t worry that you’ll miss it; we’ll be sending out emails, texts, and other messages to let participants know it is available.
You can say “yes,” “no,” or “don’t know” to getting DNA results, and you can always change your mind. If you say yes, you’ll get DNA results on an individualized timeline. The results won’t come immediately or all at once. Each time we have new results ready for you, you’ll hear from us. You can then decide whether you want to get those specific results.
If you haven’t yet been invited to give blood or saliva samples, stay tuned. Our sites are not scheduling in-person appointments right now, but we will in the future. In the meantime, one thing that you can do is complete all the activities you see under “My To-Do List” in your All of Us account.
We’ll start with information on ancestry and some interesting traits, such as why you might like or dislike cilantro. Later, we plan to return DNA results related to health. These might include your risk for certain diseases or health conditions. They could also include how you might react to certain medications. The process for giving you these results takes longer, because they are related to your health. We need to make sure we are giving you accurate results in the most responsible way we can. Even with the care we take in giving you DNA results, they are still results from a research program. Your doctor will need to recheck your results before any change in your medical care.
When you get results, we will offer more information to help you understand them. We’ll also offer expert information through our Genetic Counseling Resource. When your results are ready, you’ll be able to talk on the phone with a genetic counselor for free. The counselors can answer your questions about what your results mean for your health, what they mean for your family, and what, if anything, you might want to share with your doctor.
Getting ready for DNA analysis and results has taken a lot of very careful planning. We want to make sure we get it right. We are grateful for your patience as you’ve waited for us to reach this step.
All of Us aims to speed up medical research breakthroughs. You make this important work happen. Because you have generously shared your health information, together we can learn more about how our biology, environment, and family histories affect our health.
Thank you for being a part of All of Us. Stay tuned for more on our COVID-19–related efforts, DNA analysis, and DNA results.
For now, stay in touch. Check your contact information in your participant account at JoinAllofUs.org or through the All of Us Research Program app to make sure it’s up to date. That way you’ll never miss an update. (Forgot your password?)