What Is DNA? DNA is short for deoxyribonucleic acid. DNA is the material that makes up genes. Genes carry information that determines your traits, such as your hair color, eye color, and risk for certain diseases.
DNA is an important source of information about health. Researchers can study DNA and other information from All of Us participants to make discoveries. They could:
When you join All of Us, we will ask if you will let researchers study your DNA. If you agree and provide blood or saliva, we will analyze the DNA in the samples. Then we can give that information back to you if you want it.
We will also make your de-identified DNA information available for approved researchers. These researchers will have to take special training, tell us what they want to study, and sign a contract stating that they won’t try to find out who you are. If we approve their project, they can then access our participants’ de-identified DNA information using our Research Hub. We can also send them a small amount of your samples or DNA to study if they request it. Whether they are using the Research Hub or your samples, researchers will not be able to see personal details like your name or where you live.
One of the goals of All of Us is to return information back to you if you want it. If you give a blood or saliva sample to the program, we can check your DNA for information that could be important for your health. We could also tell you about other results, such as your genetic ancestry (where your family comes from). We would then share the results—which are not a medical diagnosis—with you through your All of Us account. We will only show you the results you want to see.
We plan to check your DNA for a variety of information. This information may include:
Researchers are always learning new things about how to study DNA. The list of what we will check for may change as researchers make new discoveries.
It is your choice whether you want All of Us to give you your DNA results. If you say “Yes” to getting DNA results, we will contact you once we are ready to check your DNA for a specific type of result. It will take some time to get your DNA results. Some participants may not get their DNA information for a few months or years. You can then log in to your All of Us account to learn more about that specific type of result. Then you can decide if you want those specific results. For example, this means that you can choose to get health-related DNA results but not genetic ancestry results, or vice versa.
If you say yes, we will share those results with you when they are ready. If you say no, you will not get that type of DNA results. You can always change your mind later.
Once we are ready to generate a DNA results report for you, we will contact you through your All of Us account. When we contact you, you can log in to your All of Us account. You will see some more information about the specific type of DNA results we are ready to check for. You can then decide if you want those results. If you decide yes, you will get access to a report on that type of DNA results when it is ready. If you decide no, you will not get that type of DNA results.
Because there are different ways to check for different types of DNA results, you can expect to get multiple messages over time. You might get some results pretty quickly but have to wait longer for others.
If you need help understanding what the results mean, you can contact our Genetic Counseling Resource (GCR). You can also view educational materials through your All of Us account that can help you better understand your results.
For a small percentage of participants, we may find DNA results that could increase your risk of a health condition. If we find this type of result in your DNA, it does not mean that you definitely have or will get a disease. To help you understand the results, you will be invited to make an appointment with a genetic counselor from our GCR. The genetic counselor will discuss the results with you and answer any of your questions.
To make sure that we can contact you with your DNA results, please make sure that your email address and/or mobile phone number is up-to-date in your All of Us participant account.
It is your choice whether you want All of Us to give you your DNA results. To get your DNA results, there are a few steps you need to take:
Then, when we are ready to check your DNA for a specific type of result, we will give you more details to help you decide if you want to get that specific type of DNA result. If you decide that you do, you will be able to tell us your choice. You will then get those DNA results when they are ready.
*If you signed this consent before April 21, 2020, you will be asked later to review and/or sign some updated information on DNA and All of Us. You will see it in your All of Us account when it is available for you. You can check the Agreements section to see when you first signed this consent to join All of Us.
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