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Our website uses cookies, as almost all websites do, to help provide you with the best experience we can. Cookies are small text files that are placed on your computer or mobile phone when you browse websites.

Cookies help us:

  • Make our website work as you’d expect.
  • Provide a message we believe is more relevant to you.

We do not use cookies to:

  • Collect any personally identifiable information.
  • Collect any sensitive information.
  • Pass personally identifiable data to third parties.

You can learn more about all the cookies and the information we collect by reading our Privacy Policy. If you don’t want to use cookies you can either exit the website or change your browser settings.

Frequently Asked Questions

Do I have to give my Social Security number?

No. We may ask for your Social Security number to help match your information to other information, but you do not have to give it to us.

How often will I hear from the All of Us Research Program?

We will offer regular updates about the All of Us Research Program. You can choose if you would like to get these updates. If you choose to get the updates, you can tell us how often and in what way you would like for us to contact you.

We may contact you to answer surveys from time to time. You can choose to answer the surveys or not. We may contact you to schedule an appointment to provide samples and have measurements.

Will you be studying my disease or condition?

Researchers will use the data collected by the All of Us Research Program to study many different diseases and conditions. It is up to each researcher to decide what they study. You can learn more about the research being done at our website, JoinAllofUs.org.

How can I enroll in a clinical trial for my specific disease or condition?

A clinical trial is a type of research study. Clinical trials look at specific medical treatments to see if they are safe and effective for humans. All of Us is a research program. It is not a clinical trial.

If you join the All of Us Research Program, we will ask you if you want to hear about chances to take part in other research. If you say yes, we will let you know about other research studies. You can then decide if you want to join those studies. You can say yes or no and still be part of the All of Us Research Program.

You can search for clinical trials at ClinicalTrials.gov.

If you find a problem with my blood or urine, will you let me know?

The All of Us Research Program is a research effort, so we cannot provide any health care.

Right now, we don’t know what tests we may do on your blood and urine samples. We also don’t know when we will do the testing. It may be months, or even several years, until we do certain tests on the samples you provided. These tests may not tell you very much about your health currently, but they will be very helpful for research.

We will share the numbers we get back from the tests. We may also provide some educational materials to help you learn more about the tests.

We always recommend that you talk to your health care provider about your health care needs and concerns.

Will I get paid?

If we ask you in the future to go to an All of Us partner center to be physically measured and give blood or urine samples and you decide to do it, we will offer you a one-time compensation of $25. It may be in the form of cash, a gift card, or an electronic voucher.

Your information could help researchers to make discoveries. If any of their research leads to new tests, drugs, or other commercial products, you will not get any profits. These inventions will be the property of the researchers who develop them or the places where they work.

If I join the All of Us Research Program, will it change my health care?

No. All of Us is a research program. It is not medical care. You can keep your current health care team even if you decide to join the All of Us Research Program.

Will researchers contact me directly?

No. The All of Us staff will be the only ones contacting you about the All of Us Research Program.

You will be able to choose how frequently we contact you. From time to time, we may send you new questionnaires or offer other ways for you to share information about your health.

What are the risks of taking part in the All of Us Research Program?

The main risk of taking part in the All of Us Research Program is to your privacy. If there is a data breach, someone could get access to the information we have about you. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but it is not zero.

We will gather information from you through the All of Us Research Program app or website. You may be asked to wear a health tracker. There is a risk to your privacy whenever you use an app, website, or health tracker. In general, there is no additional risk to your privacy if you use any of these technologies as part of the All of Us Research Program. However, the All of Us Research Program will be collecting many different types of information from you. There may be additional risk to your privacy in case of a data breach, because of the amount of information that the database contains.

Although we will not give researchers your name, we will give them basic facts such as your race, ethnic group, and sex. This information helps researchers learn whether things that affect health are the same in different groups of people. These findings could one day help people of the same race, ethnic group, or sex as you. However, others could misuse the information to support harmful ideas about groups.

If you give a blood sample, the most common risks are brief pain and bruising. Some people may become dizzy or feel faint. There is also a small risk of infection.

Taking part in the All of Us Research Program may have risks that we don’t know about yet. We will tell you if we learn anything that might change your decision to take part.

When will I get my DNA results?

Once you provide your blood or saliva samples, it might take a few months or even a few years for All of Us to check your DNA. We plan to start by processing a portion of participant DNA samples. We will then process more and more DNA samples over time. When we are ready, we will ask you to tell us if you want your DNA results.

You will get your DNA results over time on an individualized timeline. The timing will depend on when All of Us can analyze your DNA. This will also depend on when you submit your blood or saliva samples to All of Us. Since we plan to check your DNA in a variety of ways, you could possibly get some DNA results fairly quickly but then wait years to get other DNA results. If we discover new ways to analyze DNA, we might look at your DNA again in the future and have updated results for you. 

Please check your All of Us account regularly for updates.

General Information

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What is research?

Research is the process of finding out new things.

What is health research?

Health research is the process of finding out new things about improving people’s health.

Why is health research important?

Health research is important because we all want to live long and healthy lives. People who do health research are identifying better ways to keep us healthy, and they are discovering new ways to treat diseases.

What is the Precision Medicine Initiative®?

The Precision Medicine Initiative® (PMI) is an exciting new program. Its goal is to help researchers to learn more about what affects people’s health. PMI will give new information and tools to people researching health. Their discoveries may lead to more personalized care and treatments.

What is precision medicine?

Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, your genes, and your family health history. The goal of precision medicine is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

Is there an All of Us Research Program app?

Yes. It is free and is available for both iOS and Android phones.

Is the All of Us Research Program a one-time activity or a long-term activity?

Our plan is that the All of Us Research Program will last for at least 10 years. We hope you will stay involved over time. If you do, researchers may better understand what causes changes in our health and what we can do about it.

If you join, you can withdraw (quit) at any time for any reason without penalty.

I don’t have a doctor. How can I find one?

There are many helpful websites that may help you find a health care provider. One site that may be helpful is https://www.hhs.gov/programs/providers-and-facilities.

What is an electronic health record (EHR)?

An electronic health record, or EHR, is a digital version of your medical chart. These records have information about your health and care you have received. If you see a lot of health care providers, you may have many EHRs. Your health care providers, pharmacists, medical labs, and hospitals usually can see your EHRs.

Who can I ask if I have more questions?

If you have more questions, you can ask us. You can call the All of Us Research Program Support Center at (844) 842-2855. You can email us at help@joinallofus.org. Or you can speak with someone in person at one of our affiliated health care provider organizations or other program partner sites.

About the All of Us Research Program

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What is the All of Us Research Program?

The All of Us Research Program is a large research program. The goal is to help researchers understand more about why people get sick or stay healthy. The All of Us Research Program is part of the Precision Medicine Initiative®.

We hope that more than one million people will join the All of Us Research Program. People who join will share information about their health, habits, and what it’s like where they live. By looking for patterns in this information, researchers may learn more about what affects people’s health.

The All of Us Research Program will last for 10 years or more. This will allow researchers to study health over time.

If you decide to join the All of Us Research Program, you will be contributing to an effort to improve the health of generations to come. You also may learn about your own health.

Who runs the All of Us Research Program?

The National Institutes of Health (NIH) runs the All of Us Research Program. There are many groups helping NIH. There is a Data and Research Center that stores the information you contribute. There is a biobank that stores samples. There is a Participant Technology Systems Center that creates tools for you to connect with us online. There is a Participant Center and numerous health care organizations that are working with us to help you sign up. Learn more about our partners on our website:
https://www.nih.gov/AllofUs-research-program/program-components

Do I need to have health insurance to join the All of Us Research Program?

No. All of Us is a research program. It is not medical care. You do not have to have health insurance to join.

Can I sign up my child(ren)?

Right now, only people who are 18 or older can join the All of Us Research Program. Children will be able to join in the future.

Do I have to be a U.S. citizen or have permanent resident status to join the All of Us Research Program?

Eligible adults who live in the United States can join the All of Us Research Program. You do not need to be a U.S. citizen or permanent resident.

If I plan to move out of the country, can I still participate in the All of Us Research Program?

Only people who currently live in the United States can join. As long as you are not planning to move to another country soon, you are welcome to sign up.

Can I join the All of Us Research Program if I don’t have a computer or internet access?

Some All of Us Research Program activities happen online. You will need to use a computer, tablet, or smartphone to complete them. If you do not have your own, you can use an All of Us Research Program kiosk at a participating health clinic or drugstore. You can also visit the All of Us Research Program website from a computer at your local library.

If you do have a smartphone, you can download the All of Us Research Program app. It is free and is available for both iOS and Android phones. If you download the app, you can complete some of the research activities right there.

Is having an email address required?

No, you can use a mobile phone number to join the All of Us Research Program.

Participation

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Why should I join the All of Us Research Program?

If you join, you will be contributing to research that may improve health for everyone. Our goal is to understand why people get sick or stay healthy. Here are some examples of what researchers might be able to discover from their research:

  • Better tests to see if people are sick or are at risk of getting sick
  • Better mobile apps to encourage healthy habits
  • Better medicine or information about how much of a medicine is right for each person

Also, you will be able to see your All of Us Research Program information, which might be interesting to you. You may also learn about your health. If you choose, you will be able to share your All of Us information with your health care provider.

How will the All of Us Research Program help me?

The All of Us Research Program is not medical treatment. You will not get direct medical benefit from taking part in the All of Us Research Program.

That said, you may indirectly benefit from taking part in the All of Us Research Program. For example, we will give you ways to see the information you share with us and the information we learn about you. This information may be interesting to you. You may learn about your health. If you choose, you will be able to share your All of Us Research Program information with your health care team. You will have the option to learn about additional research opportunities. Finally, you will be helping researchers make discoveries that may help future generations.

How do I join the All of Us Research Program?

To join, visit the All of Us Research Program website, www.JoinAllofUs.org. You can also download the All of Us Research Program app (iOS versionAndroid version).

You will be asked to sign up with your email address or mobile phone number. Because All of Us is research, you will also be asked to complete an informed consent process. This process tells more about what is involved and the risks and benefits of joining.

What will you ask me to do?

If you decide to join the All of Us Research Program, we will ask you to share different kinds of information. We will ask you basic information like your name and where you live. We will ask you questions about your health, family, home, and work. If you have an electronic health record, we may ask for access. We may ask you to go to a local clinic or drug store for a free appointment with us. At this appointment, we will collect basic physical measurements, including your height, weight, and hip and waist measurements, as well as your blood pressure and heart rate. We might ask you to give samples, like blood or urine, at the appointment.

Can I decide which research studies are allowed to use my health information?

No. If you decide to join, your information will be available for many research studies.

Do I have to give my Social Security number?

No. We may ask for your Social Security number to help match your information to other information, but you do not have to give it to us.

How often will I hear from the All of Us Research Program?

We will offer regular updates about the All of Us Research Program. You can choose if you would like to get these updates. If you choose to get the updates, you can tell us how often and in what way you would like for us to contact you.

We may contact you to answer surveys from time to time. You can choose to answer the surveys or not. We may contact you to schedule an appointment to provide samples and have measurements.

Will you be studying my disease or condition?

Researchers will use the data collected by the All of Us Research Program to study many different diseases and conditions. It is up to each researcher to decide what they study. You can learn more about the research being done at our website, JoinAllofUs.org.

How can I enroll in a clinical trial for my specific disease or condition?

A clinical trial is a type of research study. Clinical trials look at specific medical treatments to see if they are safe and effective for humans. All of Us is a research program. It is not a clinical trial.

If you join the All of Us Research Program, we will ask you if you want to hear about chances to take part in other research. If you say yes, we will let you know about other research studies. You can then decide if you want to join those studies. You can say yes or no and still be part of the All of Us Research Program.

You can search for clinical trials at ClinicalTrials.gov.

If I am already enrolled in another study, can I still join the All of Us Research Program?

You can join the All of Us Research Program even if you are in other health studies.

If you are already in another study, you may want to talk with your health care team before joining the All of Us Research Program. The All of Us Research Program is not a study, so you should still be able to join.

If I am already enrolled in another study, why should I join the All of Us Research Program?

Instead of focusing on just one disease or condition, the All of Us Research Program will help a lot of researchers study many different things about health. The All of Us Research Program is also unique because it will last for at least 10 years. It will include participants from lots of different backgrounds.

Does it cost anything to join?

Joining the All of Us Research Program is free and won’t cost you anything more than a little bit of your time. All activities are free. There are no costs to you or your insurance.

If you use the All of Us Research Program app on your smartphone, it will count against your data on your phone plan. You can set the app to use only Wi-Fi to avoid this.

Will I get paid?

If we ask you in the future to go to an All of Us partner center to be physically measured and give blood or urine samples and you decide to do it, we will offer you a one-time compensation of $25. It may be in the form of cash, a gift card, or an electronic voucher.

Your information could help researchers to make discoveries. If any of their research leads to new tests, drugs, or other commercial products, you will not get any profits. These inventions will be the property of the researchers who develop them or the places where they work.

If I join the All of Us Research Program, will it change my health care?

No. All of Us is a research program. It is not medical care. You can keep your current health care team even if you decide to join the All of Us Research Program.

Will the All of Us Research Program communicate directly with my health care team?

No, but you can choose to share your information with your health care team.

If I join, do I have to do all of the activities?

If you decide to join the All of Us Research Program, you get to choose how much you participate. We are thankful for your involvement at any level. We will ask everyone who joins about their health, family, home, and work. We may also invite you to do other activities, but you do not have to do them.

Will researchers contact me directly?

No. The All of Us staff will be the only ones contacting you about the All of Us Research Program.

You will be able to choose how frequently we contact you. From time to time, we may send you new questionnaires or offer other ways for you to share information about your health.

Will my health information be shared with any insurance companies (health, life, disability, etc.)?

We take your privacy seriously. We will take great care to protect it. If you receive follow-up care because of the program, your insurance may be billed.

If there is a data breach, insurance companies could get access to the information we have about you. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but it is not zero.

What are the risks of taking part in the All of Us Research Program?

The main risk of taking part in the All of Us Research Program is to your privacy. If there is a data breach, someone could get access to the information we have about you. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but it is not zero.

We will gather information from you through the All of Us Research Program app or website. You may be asked to wear a health tracker. There is a risk to your privacy whenever you use an app, website, or health tracker. In general, there is no additional risk to your privacy if you use any of these technologies as part of the All of Us Research Program. However, the All of Us Research Program will be collecting many different types of information from you. There may be additional risk to your privacy in case of a data breach, because of the amount of information that the database contains.

Although we will not give researchers your name, we will give them basic facts such as your race, ethnic group, and sex. This information helps researchers learn whether things that affect health are the same in different groups of people. These findings could one day help people of the same race, ethnic group, or sex as you. However, others could misuse the information to support harmful ideas about groups.

If you give a blood sample, the most common risks are brief pain and bruising. Some people may become dizzy or feel faint. There is also a small risk of infection.

Taking part in the All of Us Research Program may have risks that we don’t know about yet. We will tell you if we learn anything that might change your decision to take part.

Can I share my information if I want to?

Yes, you can share your All of Us Research Program information with anyone you choose. For example, you can share your information with your health care team. You can share your information with your family or loved ones. You will be able to access your information online through the All of Us Research Program Participant Portal.

How long will you keep my information?

Unless you withdraw (quit) and tell us to make your health data unavailable for new studies, there is no limit on how long it will be stored and used for research. Your data may be useful in improving health for generations to come.

You can decide to withdraw at any time. If researchers already have your data or samples for their studies, we at All of Us cannot get it back. Also, we will let researchers check the results of past studies. If they need your old data to do this work, we will give it to them.

How do I withdraw from the All of Us Research Program?

You can decide to withdraw (quit) at any time. You can tell us through the app or website. You can call us toll free at (844) 842-2855.

If you choose to leave the program, we will stop collecting information. You can decide what you want to do with the information and any samples you have shared with All of Us. If researchers already have your data or samples for their studies, we at All of Us cannot get it back. Also, we will let researchers check the results of past studies. If they need your old data to do this work, we will give it to them.

If you withdraw and want to join again in the future, you will need to create a new account, complete the consent process, and begin the program again.

If I withdraw from (quit) the All of Us Research Program, can I join again later?

You may join again at any time. However, you will need to create a new account, complete the consent process, and begin the program again.

Will I get paid for providing a saliva sample at home?

If you provide a saliva sample through an All of Us mailed saliva kit, you will not receive compensation.

Samples and Physical Measurements

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What is a sample?

A sample is blood, urine (pee), saliva (spit), or other material from your body. We may invite you to give samples as part of the All of Us Research Program. You can say yes or no.

What types of samples does the All of Us Research Program collect?

At this time, we are collecting blood and urine (pee) samples. We may ask for a saliva (spit) sample, too.

Why does the All of Us Research Program want samples and physical measurements?

Samples and physical measurements such as height, weight, blood pressure, and heart rate are ways to understand both health and disease. All the data collected will be valuable for researchers. Researchers will study things in samples like chemicals, biomarkers, and DNA. Chemicals include things like medications or drugs. Biomarkers are signals your body gives off. Researchers may also want to study your DNA. DNA is in your blood and other samples. Genes are made of DNA. You will be able to choose if you want to see results about you or your samples.

Will you test my samples for drugs?

Yes. Your samples may be tested for medications and drugs. We will use this information for health research. We will not use it for criminal prosecution.

Can I do the physical measurement and sample activities from home?

If we ask you to have physical measurements and give samples, you will have to go to a place that is participating in the All of Us Research Program. These places are usually health clinics or drugstores. We will give you a list of places close to where you live where you can go. We are just getting started, so we may not have a partner near you today, but we have many new locations planned.

In the future, we may offer home visits in limited cases. In general, we will offer home visits only to people who have limited mobility or are too sick to travel.

Where and how long will my samples be stored?

Your samples will be sent to a secure lab. Currently, the National Institutes of Health has a partnership with the Mayo Clinic, based in Rochester, Minnesota. The Mayo Clinic is the storage lab for the All of Us Research Program.

There is no time limit for how long we will store your samples. The exceptions are if you withdraw and tell us to destroy your samples and if there are limits imposed by law.

If I’m not comfortable giving a sample, can I still participate?

You get to choose how much you participate. We are thankful for involvement at any level. We will ask everyone who joins about their health, family, home, and work. We may also invite you to do other activities, but you do not have to do them.

Can I give a blood sample if I’m ill?

Probably yes. It depends on the illness you have. If you have a blood disease or have had a transfusion, you may need to check with your health care team before giving a blood sample.

If you have donated blood or had a blood draw earlier in the day, you may need to reschedule your blood sample appointment.

If you find a problem with my blood or urine, will you let me know?

The All of Us Research Program is a research effort, so we cannot provide any health care.

Right now, we don’t know what tests we may do on your blood and urine samples. We also don’t know when we will do the testing. It may be months, or even several years, until we do certain tests on the samples you provided. These tests may not tell you very much about your health currently, but they will be very helpful for research.

We will share the numbers we get back from the tests. We may also provide some educational materials to help you learn more about the tests.

We always recommend that you talk to your health care provider about your health care needs and concerns.

Genomics and DNA

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How do I get my DNA results from All of Us?

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:  

  1. Log in to your All of Us account.

  2. Complete the “Consent to Join the All of Us Research Program” to participate in the program.*

  3. Agree to share your electronic health records (EHRs) with All of Us. While this is not required to participate in the research program, we currently invite participants to provide blood and other samples only if they have agreed to share their EHRs.

  4. Go through the Consent to Receive DNA Results when it becomes available in your All of Us account. At the end of that consent, tell us if you want to get your DNA results. 

  5. Complete The Basics survey.

  6. When invited to do so, make an appointment to provide your samples to All of Us so that we can look at your DNA. 

  7. Go to your appointment and provide the samples.

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 17, 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

Why can’t I find the Consent to Receive DNA Results in my All of Us account? / When will I get to see the Consent to Receive DNA Results?

If you joined the program before April 17, 2020, the Consent to Receive DNA Results is not yet available in your All of Us participant account. We plan to add it in the near future and will send you an email, text, and/or message in your All of Us participant account when it is ready for you to view. 

Please make sure that your contact information is up-to-date in your All of Us participant account. If you forgot your password, you can go to the Log In page at https://participant.joinallofus.org and select the “Forgot Password” link. Or you can call our Support Center at 844-842-2855 or email help@joinallofus.org.

 

When will I get my DNA results?

Once you provide your blood or saliva samples, it might take a few months or even a few years for All of Us to check your DNA. We plan to start by processing a portion of participant DNA samples. We will then process more and more DNA samples over time. When we are ready, we will ask you to tell us if you want your DNA results.

You will get your DNA results over time on an individualized timeline. The timing will depend on when All of Us can analyze your DNA. This will also depend on when you submit your blood or saliva samples to All of Us. Since we plan to check your DNA in a variety of ways, you could possibly get some DNA results fairly quickly but then wait years to get other DNA results. If we discover new ways to analyze DNA, we might look at your DNA again in the future and have updated results for you. 

Please check your All of Us account regularly for updates.

How will All of Us give me my DNA results?

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.

 

What can I expect to learn from All of Us about my DNA? What exactly will All of Us check my DNA for?

We plan to check your DNA for a variety of information. We expect this will include information about:

  • Your ancestry (where your family comes from),
  • Your traits, such as why you might love or hate cilantro,
  • Whether you may have an increased risk of developing a particular health condition,
  • How your body might react to certain drugs, and/or
  • Other health-related information.

Researchers are constantly learning new things about how to study DNA. The list of what we will check for may change as researchers make new discoveries. The American College of Medical Genetics and Genomics maintains a list of genes that are associated with the risk of certain serious health conditions. If people know in advance that they are at higher risk for one of these health conditions, there are steps they can take to help prevent it or identify it early on. 

One of the reasons All of Us exists is to learn more about DNA. As we learn more, we may go back and look at your DNA again in a new way. We will tell you if we find anything new. We will tell you if we need to change anything that we have already told you about your DNA. 

Please remember that All of Us Is a research program. If you know you are at risk for certain health conditions, speak with your health care provider.

What is the difference between how All of Us studies my DNA and medical genetic testing?

All of Us is a research program and we analyze DNA for research purposes. While we analyze your DNA, we can also check your DNA for information that may interest you. The purpose of medical genetic testing is to help your health care provider diagnose or treat you. All of Us is not a health care provider and does not offer medical genetic testing. If you receive health-related DNA results from All of Us, it’s always good to discuss them with your health care provider. Using their professional training, your health care provider may want to take additional steps, including ordering a medical genetic test to confirm the results.

How do I contact a genetic counselor?

Genetic counselors are trained healthcare professionals. They have a graduate degree in medical genetics and counseling that trains them to help people understand their DNA results and how it can affect their lives. As a participant in the All of Us Research Program, you will be able to contact a genetic counselor through our Genetic Counseling Resource (GCR) for free.

Once you get your DNA results from All of Us, you will be able to schedule a genetic counseling appointment online through your All of Us account. You will also be able to contact the All of Us Support Center at 884-842-2855 and the staff there can help answer your questions. If needed, they will also be able to set up an appointment for you with a genetic counselor at our GCR. The GCR also provides educational materials for you and your health care provider about your DNA results. 

If we find DNA results that raise your risk for a health condition, we will ask you to contact a genetic counselor from our GCR. You can usually get an appointment within 48 hours. At the appointment, the genetic counselor can answer any questions you may have about what your results mean for you and your family. If you do not have a health care provider, the genetic counselor can also connect you with a health care provider who can help you know what next steps to take.  

The GCR will have Spanish-speaking genetic counselors.

How will you protect my DNA and information about my DNA?
  • The All of Us Research Program stores blood, saliva, and urine samples in a secure lab called a biobank. The biobank stores DNA information about the samples in a secure database at our Data and Research Center. Researchers who want to study this information must agree to take great care in using it. 

  • All of Us will not sell your health information to anyone. We also have privacy and security safeguards in place to protect your information and your identity.

  • Your privacy is very important to us. We will protect your genetic information in the same way we protect the other information you share with the All of Us Research Program. To learn more, you can view our Privacy Safeguards page on our website or view your consent form in the Agreements tab of your All of Us account. 

  • We follow all federal, state, and local laws and regulations for keeping information safe.

  • We also have Certificates of Confidentiality from the U.S. government. They will help us fight legal demands (such as a subpoena) to give out information that could identify you. 

  • The Genetic Information Nondiscriminatory Act of 2008 (GINA) is a federal law that protects you from certain kinds of discrimination based on your genetic information.

  • We have strict internal policies and procedures to make sure your data is not misused.

  • We store information on protected computers. We limit and keep track of who can see it.

  • We have security experts who have done and will keep doing thorough security testing.

  • We will tell you if there is a breach that is a risk to your privacy.

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Can my DNA information be used against me?

All of Us is designed to protect the security of our participants’ data. There are laws that help prevent your DNA information from being used against you, but there is always a chance it could happen. 

  • Employment: One of the laws that can help is called the Genetic Information Nondiscrimination Act (GINA). It says employers can’t treat people differently because of their DNA. It also says employers can’t require you to have a DNA test to get or keep a job. The law does not apply to employers with fewer than 15 people. It also does not apply to uniformed military.  

    The All of Us Research Program will not share your DNA results with your employer. However, if you share your results on social media or elsewhere in public, your employer could learn about your DNA results. If that happens, laws like GINA help prevent your employer from using this information against you.

    The Americans with Disabilities Act is another law. It says employers can’t discriminate based on disability status.

  • Health insurance: All of Us will not share your DNA results with your health insurance company. GINA also says health insurers can’t use DNA information against people. They can’t use it to change your coverage, drop you, or charge you more. The law does not apply to some other types of insurance (disability, life, and long-term care insurance). Also, the Patient Protection and Affordable Care Act says health insurers cannot use your health information to decide whether to cover you. They also can’t use it to decide how much to charge. Two exceptions are your age and whether you smoke. Another exception is if you are in a “grandfathered” health insurance plan.  Go to healthcare.gov for more information.

  • Disability, life, and long-term care insurance: The All of Us Research Program will not share your results with your insurance company and will take great care to protect your privacy. However, right now, there is no law preventing disability, life, and long-term care insurers from using your DNA information. In most places, they can ask you if you have information about your DNA and you may have to tell them what you know. They could use that information to decide if they will cover you and how much they charge. It could make it difficult to get these types of insurance. These types of insurance could be more expensive. In some states or locations, there are laws that say life, disability, and long-term care insurers can’t use DNA information to decide about your coverage. To find out if you are protected by these kinds of laws, contact the attorney general for your state or territory. You can learn how to contact your attorney general at https://www.usa.gov/state-attorney-general.

The National Human Genome Research Institute has more information about these and other laws. The site includes information about exceptions to the laws.

We also have Certificates of Confidentiality from the U.S. government. They will help us fight legal demands (such as a subpoena or a request from federal, state, or local law enforcement) to give out information that could identify you.

What will you do to protect my privacy?

Your privacy is very important, and we will take great care to protect it if you join. Here are a few of the steps we will take:

  • Information we collect will be stored on protected computers. We will limit and keep track of who sees the information.
  • We will remove your name and other direct identifiers (like your Social Security number) from your information and replace them with a code. There is a master list linking codes to names. This list is kept secure, and very few people have access to it.
  • To work with your health information, researchers must promise not to try to find out who you are.
  • We will tell you if there is a data breach.
  • The All of Us Research Program has Certificates of Confidentiality from the U.S. government. This will help us fight legal demands (such as a court order) to give out information that could identify you.

Still, loss of privacy is a risk of taking part in the All of Us Research Program. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but it is not zero.

Will you ever give out my name or other information that identifies me to anyone outside of the All of Us Research Program?

If you join the All of Us Research Program, there are a few times when we might need to give out your name or other information about you. For example:

We may give out information about you to protect your health or the health of others, including:

  • If we learn or suspect that you are being abused
  • If we learn or suspect that you are abusing, are neglecting, or have abandoned someone who depends on you for care, like a child or dependent adult
  • If we learn that you plan to harm someone
  • If we learn that you have certain diseases that could be transmitted to others

We will give out information to meet U.S. research laws and regulations. One requirement of doing research is that we let officials from the U.S. government review our work. This is to make sure we are doing things the right way.

What will you do with my email address or phone number?

We may email you or call you to schedule an appointment. We may send you emails about the All of Us Research Program. We may email or call you to tell you about other opportunities to participate in research. We may reach out to ask you for updates or additional information about your health.

You can tell us if and how often you want to be contacted.

Will you sell my email address or phone number?

No, we will never sell your email address or phone number.

Will my insurance know if I join the All of Us Research Program?

We will not let your insurance know if you join unless you are injured. We do not expect you to be injured. Answering surveys, being measured, and giving samples are very safe activities. They are unlikely to cause injury. But if you are injured because of the All of Us Research Program and you have insurance, your insurance may be billed.

Will you share my residency status with the government?

We will not ask you about your residency status. We cannot share your residency status, because we will not know it.

Will you share my citizenship status with the government?

We will not ask you about your citizenship status. We cannot share your citizenship status, because we will not know it.

Who can see the information I give the All of Us Research Program?

We will create a database on the All of Us Research Program website. Everyone can use the database to make discoveries. The information in the database that anyone can see will be about the group of participants. For example, it might tell the average age of the people who have joined the All of Us Research Program. It will not include information about individual people. It will not include your name or other information that directly identifies you.

Only researchers approved by the All of Us Research Program will be allowed to see data from individual participants. These researchers may be from anywhere in the world. They may work for commercial companies, like drug companies. The research may be on many different topics.

Questions?

Our advisors are ready to answer your questions.
We’re open from 7 a.m. to 10 p.m. Eastern, excluding public holidays.

Your privacy is important to us. To keep it secure, please do not include any personal information (such as your address, social security number, or health details) in your email or chat messages. Thank you.