All of Us Research Program Website and App Privacy Policy

 

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

 

 

Privacy Policy

The All of Us website and app are tools 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 you visit the All of Us website, we collect information about the way you use the website. Here is a list of the information we collect:

·       The date and time of your visit to the All of Us website.

·       The pages you visit on the All of Us website.

·       The time you spend on each page.

·       Your actions on each page. For example, if you click a button on the page.

·       The type of device you use to visit our website. For example, are you using a tablet or mobile phone?

·       Your device’s IP (internet protocol) address. An IP address is a string of numbers that identifies a device on the internet. It does not identify the person using the device.

·       Your device’s operating system. For example, many PCs use the Windows operating system. Many Apple computers use a version of iOS.

·       The browser you use to visit the All of Us website.

 

We use tags, beacons, and cookies to keep an eye on All of Us website traffic. They tell us things like how people get to our website and if they have visited before.

We also ask web service providers to tell us about All of Us website traffic. Web service providers, like the company Unbounce, are the companies that host websites as well as the Google Analytics platform.

 

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).

 

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 Use Data

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

·       For research.

·       For security.

·       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 will NOT sell your data or contact information.

 

 

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 have a Certificate of Confidentiality from the U.S. government. This Certificate may help us keep your data private. For example, it may help us fight requests for data from law enforcement.

·       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.     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, the FAQs on our website, and the All of Us Privacy and Security webpage.

2.     To service providers. 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.

3.     For legal reasons. We may give out data if we are required to by law. Otherwise, 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.

 

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.

 

How long will we keep your data?

Except if there are limits imposed by law, there is no limit on the length of time we will keep your data. Researchers will use your data for research long into the future.

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

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

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

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)

Version 5 (8 February 2019)