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All of Us Research Program Website and App Privacy Policy

Brief Statement

The All of Us website and app are part of the All of Us Research Program. They are not for medical care, advice, or treatment.

Longer Statement

The All of Us Research Program website and app are tools for research. They are not for medical care, advice, or treatment. If you need medical care, advice, or treatment, you should see a healthcare provider. Do not use the All of Us website or app in place of seeing a healthcare provider.

Privacy Policy

Effective date: February 26, 2018

The All of Us website and app are part of the All of Us Research Program. All of Us (“we” or “us”) is a research program funded by the U.S. government.

This Privacy Policy says what information we will collect through the All of Us website and app. It also says what we will do with this data.

By visiting the All of Us website or using the All of Us app, you agree to this Privacy Policy.

Data We Collect

When people visit the All of Us website, we gather data from our server log. Our server log tells us about how people access the website. We also use Google Analytics. This is a tool that tells us how long people are spending on each webpage.

If you want to join All of Us, we will ask you to create an account. When you create an account, we will collect a username, a password, and your email address. We ask your date of birth to make sure you are at least 18 years old. At this time, All of Us is for people age 18 or older (19 in Alabama and 21 in Puerto Rico).

If you create an All of Us account, we will collect data on how you use the app and the website. For example, we will record your internet protocol address. (Your internet protocol address is the string of numbers that identifies your computer on the internet.) We will record the type of web browser you use when you visit the website. We will record the pages you visit on the All of Us website and the date and time you sign in.

We use cookies to make it easier for you to log in to the app and website. A cookie is a tool that saves information like your password. We will not use cookies or other tools to gather information about you outside of the All of Us app or website.

How We Use Data

We will use the data we collect through the All of Us website and app:

  • To make sure the website and app work the way they are supposed to.
  • To improve the website and app.
  • To make the website and app easier to use. For example, we will keep information you have entered so it does not need to be re-entered.

If you give us your contact information, we may use it to get in touch with you. Some examples of why we might contact you are to give you technical support or to tell you what’s new with All of Us.

We may ask you for permission to match the data we collect through the website and app to your study data. This will help us improve our website and app outreach. We will NOT sell your data or contact information.

It is important to note that we also collect study data for the All of Us Research Program using the All of Us app and website. For example, if you join, we may ask you to complete a health survey. If you are interested, you would do so on the app or website. If you take part in a sensor module, the data for that module may be collected through the app or website. We will tell you any time we are collecting study data through the app or website. You will have the choice to participate or not.

How we protect your privacy

Your privacy is important to us. Here are some of the steps we will take to protect your privacy.

  • Data we have about you will be stored on protected computers. We will limit and track who can see this data.
  • We will limit who is allowed to see information that could directly identify you, like your name or social security number.
  • We will tell you if there is a serious data breach.
When and Why We Disclose Data

We will disclose (give out) data that we collect through the All of Us website and app only for the reasons we list here. Other than these reasons, we will not sell, rent, lease, give, or share your data without your permission.

Reasons we disclose data:

  1. If we work with a service provider, we will give them any data they need to do the job we have asked them to do. A service provider is someone who is helping us with a part of All of Us. The service provider will have to sign a contract promising to use the data only for the job they are doing for us. Also, they will promise to keep the data safe.
  2. We may give out data if we are required to by law. We will not give out data in any civil, criminal, administrative, legislative, or other proceedings.

In cases where the law says we are required to give out data, we will try to give out as little data as possible. We will try to protect your privacy as much as we can. Whenever possible, we will tell you if we have to give out data.

It is important to note that we will give access to the study data for research. The purpose of All of Us is to help researchers make discoveries. Study data we collect through the app and website will be stored in the All of Us research database. Researchers will use this database for their studies. You can learn more about the use of your study data in the consent forms and the All of Us Privacy and Security webpage.

Do Not Track

If you do not want us to track your use of the All of Us Research Program website, you can use ad blockers or Do Not Track preferences in your browser. If you do not want us to track your use of the All of Us app, do not download it.

Data Security

We take data security seriously. We use systems and procedures to protect the data we collect from you through the All of Us Research Program website and app. These systems and procedures help us prevent loss, theft, and misuse of your data. They help us prevent data breaches. Still, no matter what we do, we cannot promise that the data we collect from you is completely secure. There is a chance that your data could be compromised. We believe the risk is very small, but it is not zero.

Your Rights and Choices

You have rights and choices about your data. For example, if there is an error in the data we collect from you, you have the right to ask us to fix it. You can call us at 1-844-842-2855 or email us at help@joinallofus.org.

You can stop using the website or app or delete the app at any time. This is not the same as withdrawing from the All of Us Research Program. If you want to withdraw, you can call us at 1-844-842-2855 or email us at help@joinallofus.org.

We may keep a copy of all the data we collect from you. This is because we have a responsibility to keep backups and archives.

If you have questions about your rights and choices or would like more information about your rights and choices, call us at 1-844-842-2855 or email us at help@joinallofus.org.

Cross-Border Transfer of Your Data

We may transfer your data to countries where you do not live. These countries may have different laws about protecting data than the country where you live. If we transfer your data, we will follow the all the laws about transferring data for any country where the data will go.

You can visit the website, use app, and take part in All of Us when you are not in the United States. If we do so, we may transfer your data to the United States.

If you visit the website, use app, or take part in All of Us, you consent to the transfer of your data.

Updates to this Privacy Policy

We may update this Privacy Policy. We will post updates on this website. If we make big changes, we will try to tell you directly. For example, we may send you an email or put a pop-up message on the website or app. If you visit the website, use app, or take part in All of Us, it means you agree to the updated Privacy Policy.

Contact

If you have any questions, comments or requests, please contact us at help@joinallofus.org or by calling 1-844-842-2855.

Versions

Here is a list of the versions of this Privacy Policy

Version 1 (14 March 2017)

Version 2 (30 April 2017)

Version 3 (23 May 2017)

Version 4 (26 February 2018)

Cookie

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.

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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.

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