National Institutes of Health All of Us Research Program

Frequently Asked Questions

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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.

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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.

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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.

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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 results 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.

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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.

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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.

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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.

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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.

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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 website. You may be asked to wear a health tracker. There is a risk to your privacy whenever you use a 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.

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What types of DNA results can All of Us give me?

Depending on your age, we plan to look at different types of information in your DNA. We expect this will include information about:

Your genetic ancestry (where your family might have lived hundreds of years ago)
Your genetic traits, such as why you might love or hate cilantro
Whether you may have an increased risk of developing a serious health condition, such as cancer or heart disease
How your body might react to certain medicines
Other health-related information

As we learn more about DNA, we may be able to add more types of DNA results to this list.

General Information

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General Information

What is research?

Research is the process of finding out new things.

General Information

What is health research?

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

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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 trying to identify better ways to keep us all healthy.

General Information

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.

General Information

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.

General Information

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.

General Information

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 www.hhs.gov/programs/providers-and-facilities.

General Information

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.

General Information

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 [email protected]. 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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About the All of Us Research Program

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 may 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.

About the All of Us Research Program

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

Eligibility

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Eligibility

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.

Eligibility

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.

Eligibility

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.

Eligibility

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.

Eligibility

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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Participation

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 and for future generations. Our goal is to understand how different factors together affect health and speed up research to develop new and tailored treatments. 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 information about which or how much of a medicine is right for each person.

Also, you will be able to see your All of Us information, which might be interesting to you. It may help you learn about your health. Adult participants may also learn about their DNA, if they choose to. Participants can share any information they receive from All of Us with their doctor, if they choose.

Participation

How will the All of Us Research Program help me?

All of Us is a research study. You will not get direct medical benefits or care from taking part in the All of Us Research Program.

That said, you may indirectly benefit from taking part in All of Us. 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. It may help you learn about your health. Adult participants may also learn about their DNA, if they choose to.

If you choose, you will be able to share your All of Us 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.

Right now, we are not able to offer DNA results for pediatric participants. We are working on this, but cannot guarantee that we will be able to. In the future, if we are able to offer DNA results for pediatric participants, we will ask parents/legal guardians for their permission before we generate results for their child.

Participation

How do I join the All of Us Research Program?

To join, visit the All of Us Research Program website, www.JoinAllofUs.org.

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.

Participation

What will you ask me to do?

If you decide to join All of Us, 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 would measure your weight, height, hips, and waist, as well as your blood pressure and heart rate. We might ask you to give samples, like blood or urine, at the appointment. We also want to know if you will want information about your DNA.

Participation

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.

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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.

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

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.

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Will you be studying my disease or condition?

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

You can search for clinical trials at ClinicalTrials.gov.

Participation

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 research studies.

If you are already in other health research studies, 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.

Participation

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.

Participation

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.

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Will I get paid?

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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.

Participation

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. In general, All of Us will not communicate directly with your health care team.

If you are an adult participant who receives health-related DNA results, we may communicate with your health care team. But we will only communicate directly with your health care team if you ask us to. If you get health-related DNA results from All of Us, like hereditary disease risk or medicine and your DNA results, you can ask All of Us to share those results with your doctor or other health care provider. You can also print your results and bring them with you to your next medical appointment. You can also show them to your provider on a smartphone.

Participation

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.

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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.

Participation

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.

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

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.

Participation

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.

Participation

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.

Participation

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 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.

Participation

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.

Participation

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.

Participation

Has the program consulted tribal leaders?

Yes. We respect that tribes are sovereign nations, with their own governments and laws. We have had ongoing conversations with tribal leaders and members across the country. These meetings helped us learn more about their views so we can support research in a way that best protects and benefits participants and American Indian and Alaska Native communities. Learn more about our work with Tribal Nations.

Participation

How can I join All of Us from home?

You can join All of Us and complete activities online. To join All of Us online, visit Participant.JoinAllofUs.org and create an account. In your account, you can consent to join the All of Us Research Program, agree to share your electronic health records, and answer health surveys.

If you complete these steps, we'll invite you to share a sample and tell us your height and weight. You can request an at-home saliva kit in your All of Us account. The kit is free and easy to use. When you’re done, it’s free to mail it back to us. Depending on your location, you may be able to donate blood and urine samples from home.

If you live near an All of Us partner site, you can also choose to schedule an in-person visit to join the program and complete activities.

Samples and Physical Measurements

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Samples and Physical Measurements

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.

Samples and Physical Measurements

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.

Samples and Physical Measurements

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.

Samples and Physical Measurements

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.

Samples and Physical Measurements

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.

Samples and Physical Measurements

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.

Samples and Physical Measurements

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.

Samples and Physical Measurements

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.

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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.

We will share the results 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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Genomics and DNA

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

It is your choice as an adult participant 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:

Log in to your All of Us account.
Complete the “Consent to Join the All of Us Research Program” to participate in the program. Depending on when you joined, you may need to sign an updated primary consent.
View any updated videos/information about DNA and All of Us that you see on your All of Us Dashboard.
Agree to share your electronic health records (EHRs) with All of Us.*
Go through the “Consent to Get DNA Results” and tell us you want your DNA results.*
Complete “The Basics” survey.*
Provide your blood, urine, and/or saliva when invited to do so.
Keep your email and/or mobile phone number up to date in your All of Us account.

Once you provide your samples, it may take a few months or even years for All of Us to check your DNA.

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 DNA result. If you decide that you do, you will then get those DNA results when they are ready.

*You can participate in All of Us without completing steps 4-6, but we generally will invite you to provide blood, urine, and/or saliva samples only if you have completed these steps. You need to provide a sample to get DNA results. We also encourage you to complete all of the surveys available in your account.

Genomics and DNA

What types of DNA results can All of Us give me?

Depending on your age, we plan to look at different types of information in your DNA. We expect this will include information about:

Your genetic ancestry (where your family might have lived hundreds of years ago)
Your genetic traits, such as why you might love or hate cilantro
Whether you may have an increased risk of developing a serious health condition, such as cancer or heart disease
How your body might react to certain medicines
Other health-related information

As we learn more about DNA, we may be able to add more types of DNA results to this list.

Genomics and DNA

When will I get my DNA results from All of Us?

When you get your DNA results will depend on when you complete the necessary steps and when you submit your sample. Since All of Us plans to check your DNA in a variety of ways, you could get some DNA results in less than a year but then wait more than a year or longer to get other DNA results.

Please check your All of Us account regularly for updates.

Genomics and DNA

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. We also will send you an email or text message. When we contact you, we’ll ask you to log in to your All of Us account so you can learn about each of the DNA results we are ready to check for. You can then decide if you want those results. You can decide “Yes,” “No,” or “I’m not sure right now” for each type of DNA result. You can always change your mind later.

If you decide “Yes,” we will analyze your DNA for that type of result. You will get access to a personalized report when it is ready. How quickly the report is ready for you will depend on the type of DNA result. Some reports can be ready almost immediately while others may take a few weeks to a few months.

If you decide “No,” we will not analyze your DNA for that type of result. If you decide “I’m not sure right now,” we will not analyze your DNA for that type of result until you tell us you want us to.

You can expect to get a new message each time we are ready to generate a new DNA result for you. Please make sure that your contact information is up to date in your All of Us account so you don’t miss our message. Please note that for your privacy, DNA results are not available in paper form, and All of Us will not mail any DNA results to your mailing address.

Genomics and DNA

Will I be able to talk to anyone about my DNA results?

Yes. Genetic counseling is available to all participants of the All of Us Research Program. Genetic counselors are specially trained to help people understand their DNA results. Appointments are free, confidential, and take place on the phone. You can choose to speak with a counselor who speaks Spanish. We also provide HIPAA-compliant interpretation in more than 200 languages. This includes American sign language.

Genomics and DNA

What is the difference between how All of Us studies my DNA and clinical DNA testing by a doctor?

All of Us is a research program. We analyze DNA for research purposes. As we analyze your DNA, we can check it for information about your genetic ancestry and traits and for information that may affect your health.

The purpose of clinical DNA testing is to help your doctor or health care provider diagnose or treat you. All of Us is not a health care provider and does not provide clinical DNA testing.

If you receive health-related DNA results from All of Us, those results are not a diagnosis. Only a doctor or health care provider can diagnose you with a health condition and determine how to treat you. If you are concerned about your DNA results, it’s always good to discuss them with your doctor or health care provider. Using their professional training, they may want to take additional steps. This may include ordering a clinical DNA test or sending you to a specialist who can order a clinical DNA test to confirm the results.

If you do not have a doctor or health care provider, you may ask an All of Us genetic counselor to help you find one. Start by contacting our Support Center at (844) 842-2855 or [email protected].

Genomics and DNA

How does All of Us protect my DNA information?

The All of Us Research Program stores blood, saliva, and urine samples in a secure lab called a biobank. We store DNA information taken from the samples in a secure database at our Data and Research Center. The information we share with researchers does not contain your name or other information that could directly identify you. Also, researchers who want to study samples or DNA information must agree to strict rules before we will share samples with them.

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.

Here are a few examples of how we keep your data safe.

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.
We have strict internal policies and procedures to make sure your data is not misused.
We store information on secure 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 risk to your privacy because of a data breach.

Genomics and DNA

Who can study my DNA?

Only approved researchers can access All of Us participant data. The researchers may be from anywhere in the world. They may work for organizations such as universities, medical centers, nonprofits, or commercial companies. Everyone who uses All of Us data for research has to follow the same rules. They must agree to protect the privacy of participants. We require researchers to describe their research projects and how they will use the data on researchallofus.org and allofus.nih.gov. We share descriptions of all research underway.

Genomics and DNA

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.

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.

Genomics and DNA

What happens to my DNA information if I withdraw from All of Us?

If you withdraw from the All of Us Research Program:

You can ask us to destroy any blood, saliva, and/or urine samples you provided. We will do so within three months.
You also can ask that we not make your data available for new studies. We will remove your data. However, if researchers already have your data, we cannot get it back from them. Also, we will let researchers check the results of past studies. If they need your data from before you withdrew to do this work, we will give it to them.

Privacy

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Privacy

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.

Privacy

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.

Privacy

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.

Privacy

Will you sell my email address or phone number?

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

Privacy

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.

Privacy

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.

Privacy

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.

Privacy

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 eventually 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.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

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Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

What is the All of Us Research Program Minute Survey on COVID-19 Vaccines?

The All of Us Research Program created the Minute Survey on COVID-19 Vaccines to find out participants' views, and experiences with COVID-19 vaccines. It is a short survey that only takes a couple of minutes to complete. It asks about your thoughts and plans around vaccination (e.g., Do you plan to get vaccinated? Have you gotten your first and/or second dose? Will you get the booster shot or additional dose if recommended for you? Did you experience any side effects?).

Finding out who does and who does not get vaccinated will help researchers learn how to improve the health care experience for everyone

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

How long is the Minute Survey on COVID-19 vaccines?

The survey has about 12 questions and should only take about two minutes of your time to complete. It includes questions about when you received any of the doses of the vaccine. If you don’t know the exact dates, you can give an approximate date. It also asks about the most recent additional doses and booster shots of the vaccine that are being recommended for certain people by the Centers for Disease Control and Prevention (CDC).

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

Who should participate in the Minute Survey on COVID-19 vaccines?

Any participant who would like to help researchers better understand the COVID-19 pandemic and how it affects people should take the survey. When people like you participate in a survey like this, researchers collect valuable information that helps them learn how individuals from different backgrounds experience and cope with the pandemic.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

Who can take the survey?

You can take the survey if you have already completed another survey called “The Basics” survey in the All of Us participants portal. The Basics is the first survey that participants fill out when they join All of Us.

To see if you have completed The Basics, you can log into the portal. Then click on “My Data” on the left-hand-side menu and click on Surveys. Your completed surveys should be listed there.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

I'm not fully vaccinated for COVID-19. Can I still take the survey?

Yes! You can still take the survey if you are not fully vaccinated.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

What if I don't plan to get vaccinated?

Even if you do not plan to get vaccinated, we would still like to hear from you. Researchers can learn a lot by knowing that some people prefer not to get vaccinated. Your preference and views about COVID-19 vaccines still provide important details for health researchers to understand how people deal with COVID-19.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

Can I opt out?

Yes. If in the past you unsubscribed from a prior survey about COVID-19 called the COPE Survey (short for COVID-19 Participant Experience), you will not be invited to take the Minute Survey. However, you will still be able to access it and take it in the portal.

If you would like to stop receiving alerts about the Minute Survey, you can unsubscribe by using the link at the bottom of the email.

If you think that you might change your mind and may want to take the survey later, you can log on the portal and still participate if it is still available.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

Why should I take part in the Minute Survey on COVID-19 Vaccines?

Your input is very important for health researchers. Taking the survey will help them better understand your decisions during this unique public health crisis. For example, researchers might better understand why some people prefer not to get vaccinated, or why others hesitate.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

When can I take the survey?

You can take the survey for as long as it is available in the portal. You will receive different invitations and reminders electronically to take it unless you have opted out of these notifications before.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

How can I take the survey?

You can take it by clicking the “Take the Survey” link when you receive an invitation or reminder by email, text, or the All of Us mobile app. The link will take you directly to the survey. But you can also take it by logging into the portal where it will be listed under the “Program Opportunities” banner if it is still available.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

Does it matter which COVID-19 vaccine I received?

No. You can take the survey regardless of which vaccine you got or when you got it.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

Why does the All of Us Research Program want to know about my vaccine preferences?

Any information about why some people prefer to get vaccinated, and others don’t, helps researchers understand what may motivate or discourage them from being vaccinated. It is also very important because it gives researchers more details on what makes some people choose to get the vaccines while others choose not to, as well as information on how participants may feel about some health issues like COVID-19.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

What are additional doses of the vaccine and who should get them?

When people who already got vaccinated against COVID-19 get an additional dose of the vaccine, this new dose can help them maintain an adequate level of protection. Additional doses are recommended only for specific groups of people.

The Centers for Disease Control and Prevention (CDC) regularly updates the guidance on who should get an additional dose. For the most up-to-date guidance, please visit COVID-19 Vaccines for Moderately to Severely Immunocompromised People.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

What does it mean to be immunocompromised?

People with weakened immune systems are considered immunocompromised. They can be immunocompromised because of certain health conditions or medications they take. For more information, please click here https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/immuno.html

If you do not know if you are immunocompromised, your healthcare provider can help you find out.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

What are booster shots and who should get them?

Studies show that after getting vaccinated against COVID-19, the level of protection against the virus may decrease over time. This can happen even among people who are not immunocompromised (those who do not have a weakened immune system). Booster shots help increase the immune response.

The Centers for Disease Control and Prevention (CDC) continuously update the guidance on who should get booster shots. For the most up-to-date guidance, please visit the webpage COVID-19 Vaccine Boosters.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

When am I considered fully vaccinated?

People who received the Pfizer or Moderna vaccines are considered fully vaccinated two weeks after getting their second dose.

People who got the single dose of the Johnson & Johnson vaccine are also considered fully vaccinated two weeks after receiving it.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

What does it mean to be partially vaccinated?

People are partially vaccinated when:

they have only gotten one dose of the Pfizer or Moderna vaccines.

People are also partially vaccinated:

until two weeks have passed since they got the second dose of Pfizer or Moderna vaccines, or
until two weeks have passed since they got the only dose of the Johnson & Johnson vaccine.

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

Does the All of Us Research Program think participants should get vaccinated?

Vaccines are an important tool to prevent infection. The All of Us Research Program encourages participants to follow the recommendations from the Centers for Disease Control and Prevention (CDC) or to consult with their health care providers to make the best choice for them.

For information on COVID-19 Vaccination from the CDC, please visit https://www.cdc.gov/coronavirus/2019-ncov/vaccines/faq.html

Frequently Asked Questions About the Minute Survey on COVID-19 Vaccines

Where can I find more resources on vaccines in general and COVID-19 vaccines?

If you are looking for more information on vaccines, these websites may be helpful to you.

Find a COVID-19 vaccine near you
VIDEO - What is a vaccine (Video from NIH)
How vaccines work (from NIH)
Understanding COVID-19 Vaccines (from the NIH)
How are COVID-19 Vaccines Developed (from the CDC)
Frequently Asked Questions on COVID-19 Vaccines (from the CDC)
VIDEO - Learn more about the FDA's COVID-19 (From the FDA)
COVID-19 Vaccine Boosters (from the CDC)
COVID-19 Vaccine Additional Doses (from the CDC)
Who Needs An Additional COVID-19 Vaccine Shoot (from the CDC)

You can also check out additional resources on COVID-19 in the Learning Center tab in the participant portal.

WEAR Study

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WEAR Study

What is the WEAR Study about?

WEAR supports the All of Us Research Program by collecting health and behavior data from Fitbit devices. As part of the WEAR Study, you may receive a new Fitbit at no cost. This will allow you to share data such as resting heart rate and number of steps. This will aid in our research.

WEAR Study

Who gets to participate in WEAR?

The goal of WEAR is to improve access to wearable devices. The study aims to reach diverse groups in the United States. These are groups that are often left out of research. WEAR looks at things like:

Age
Sex
Race
Ethnicity
Income
Education
Access to health care
Disability

You may be selected for WEAR if you are historically underrepresented in biomedical research based on any of these categories. Number of devices is limited, so we cannot guarantee an invitation to this study even if you might otherwise be eligible. You will not be invited to WEAR if you have already connected a wearable device to the All of Us Research Program.

WEAR Study

I got an invitation but didn’t respond in time. Can I still get a Fitbit?

No, participants were chosen on a first come, first serve basis. However, we may invite you to join in other ways in the future.

WEAR Study, Wear Page

What are the risks of joining the WEAR Study?

The risks of joining the WEAR Study are similar to the risks of participating in the All of Us Research Program. You can review those risks in the Consent to Join the All of Us Research Program. You can find this form in the Agreements area of your account. There is also a risk to your privacy whenever you use an app, website, fitness tracker, or smartwatch. To be part of the study, you agree to share different types of data in your All of Us record. If there is a data breach, there may be additional risk to your privacy because of the amount of data in your All of Us record.

Additionally, to participate in the WEAR Study, you’ll be asked to set up a Google account or connect a Fitbit or Google account you already own. If you use your Fitbit devices and services with your Fitbit account, your data will be handled by Fitbit’s Terms of Service and Privacy Policy. Please read them carefully. You can read them here: Privacy Policy and Terms of Service.

Here are some key points to keep in mind:

All of Us does not control Fitbit’s Terms of Service or Privacy Policy. The Terms of Service and Privacy Policy are like an agreement or set of rules between you and Fitbit. You must agree to these rules before you can use your Fitbit tracker or smartwatch.
Fitbit’s Terms of Service are legally binding. Fitbit may ask you to agree to certain things that affect your relationship with Fitbit, like what happens if you are injured and how to settle any legal disagreements with Fitbit.
Although All of Us will protect the information that you give us, we cannot protect or control what Fitbit does with your Fitbit data.
Your Fitbit device tracks steps and more. The data Fitbit receives depends on your device. The devices used in this study track heart rate, location, and sleep.
Fitbit uses the data it receives to provide, improve and develop its services. For example, with some devices, it uses information from your device to tell you about your activity and sleep.
You can delete the data collected by Fitbit and your Fitbit account at any time. Click here for more information.
Fitbit is a part of the Google Family. Click here for more information.

If you don’t already have a Fitbit or Google account, you will be asked to set up a Google account. When you set up a Google account for Fitbit, you will be asked to agree to Google’s Terms of Service and Privacy Policy. Please read them carefully. You can read them here Terms of Service and Privacy Policy. Here are some key points to keep in mind:

All of Us does not control Google’s Terms of Service or Privacy Policy.
The Terms of Service and Privacy Policy are like an agreement or set of rules between you and Google. You need to follow these rules to use Google services and have a Google account. These rules are legally important. Not following them could lead to legal consequences.
Google collects your data when you use their services. This included what you share, like your name when creating an account. And what they learn as you use their services. This can also include your location data depending on your device and account settings.
If you use a Google account for Fitbit to log in Fitbit, your Fitbit data will be linked to your Google account and Google’s Privacy Policy will apply to Fitbit’s devices and services. Click here for more information.
Google uses the data to offer Google services, such as enhancing your search experiences and improving their services.
You have the ability to manage your data in your Google account. You can delete your Google account at any time. More details are in Google’s Privacy Policy. Deleting the Google account used for Fitbit will also delete your Fitbit data.
All of Us will protect the data you share with us. But we cannot protect or control what Google does with your Google account data.

In addition to what is mentioned above, you may experience reduced battery life of your mobile device by connecting the Fitbit device using Bluetooth. It is recommended that you connect to your Wi-Fi network before using the participant portal. Please also note that data and message charges may occur as a result of taking part in this study. You must also maintain good hygiene while wearing your Fitbit device to avoid developing skin rash, as could happen with any wrist worn accessory.

Fitbits have a heart rate tracking feature called PurePulse Technology that may pose risks to users with certain health conditions. Consult your doctor prior to use of such products if you (1) have a medical or heart condition, (2) are taking any photosensitive medicine, (3) have epilepsy or are sensitive to flashing lights, (4) have reduced circulation or bruise easily, or (5) have tendonitis, carpal tunnel syndrome, or other musculoskeletal disorders.

Fitbit devices should not be used for medical purposes. Consult your health care professional about any questions or health issues you may have.

WEAR Study, Wear Page

Who has access to the WEAR Study data?

Only the All of Us program and approved researchers will be allowed to see your data. Your WEAR Study data will be combined with the rest of your All of Us data. These researchers may be from anywhere in the world. They will study many different things. They may work for companies, like drug companies. However, Fitbit and/or Google will also have access to your Fitbit data as outlined in Fitbit’s Terms of Service and Privacy Policy and Google’s Terms of Service and Privacy Policy depending on your account type you used for Fitbit.

WEAR Study, Wear Page

How is this data going to be used?

Researchers may use these data to learn more about lifestyle behaviors, health and usage of wearable sensors. This information, in addition to other data you have shared with the program, can give researchers a more complete understanding about your lifestyle habits.

WEAR Study, Wear Page

If I say no, can I still be part of All of Us?

Yes. You can choose whether or not you want to take part in the WEAR Study. If you say no, you can still participate in other parts of All of Us. We respect whatever you decide.

WEAR Study

I already have a Fitbit. Can I give this one to someone else?

Please use the Fitbit device we’ve provided. Do not give it to anyone else. It is important that you are the one who wears the device so that researchers can combine it with the other information you have shared. To participate in WEAR you can use the account for Fitbit you already have.

WEAR Study

I already have a Fitbit. Can I share data from that device?

Yes, you can connect your Fitbit device to the All of Us Research Program through your participant account. If you get invited to receive a new Fitbit and you agree, we would like you to wear the new Fitbit device that we provide to you. Please do not give it to anyone else.

WEAR Study

If I agree to participate, do I have to wear it?

We hope all participants who get Fitbit devices will wear them and share their data with the program. However, you can stop wearing your Fitbit device at any time.

WEAR Study, Wear Page

Can I choose which Fitbit data I share?

You can decide which data from your account for Fitbit you want to share with the All of Us Research Program when you connect your account for Fitbit to All of Us. These data include things like sharing steps, heart rate, weight, and sleep.

WEAR Study

If I withdraw from All of Us or the WEAR Study, do I have to return the Fitbit or pay for it?

No. If you decide to withdraw, you do not have to return your Fitbit and you will never be asked to pay for it.

WEAR Study

Can I give the Fitbit away after the project?

If we stop collecting data or you decide to withdraw from the project, you do not have to return your Fitbit to us. You can give your Fitbit away if you choose to. Before you give it away, please disconnect your Fitbit from your All of Us Research Program account and restore your Fitbit device to factory settings.

WEAR Study

What device will I get?

You will be able to choose between the Fitbit Charge™ tracker or Fitbit Versa™ smartwatch. You may be able to choose the color, and will receive the standard band that comes with the device. The number and type of devices are limited and will be given on a first-come basis.

WEAR Study

Are you selling my Fitbit data?

No. The All of Us Research Program will not sell your information and Fitbit does not sell your Fitbit data. Google also does not sell your personal information, as outlined in their Privacy Policy. Researchers may use your de-identified data to study many topics. The researchers may come from different places, including drug companies. Before getting access to All of Us data, researchers must share why and how they will use the data.

WEAR Study

What can I learn from my Fitbit?

You can find detailed information about different Fitbit devices and their functionality here.

WEAR Study

Will you be tracking me? Will you be collecting GPS data?

All of Us will not collect or store your GPS data or data about your friends. However, Fitbit and/or Google may have access to this data depending on the account type you used for Fitbit. Data that Fitbit and Google collects and how it is used is outlined in their Terms of Service and Privacy Policy.

WEAR Study

Who do I contact for support?

For support questions, please contact the Support Center at (844) 842-2855 or [email protected].

Questions?

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

Toll-free TTY-based Telecommunications Relay Service is available by dialing 711.

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.