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:
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). Additional information about you may be collected in support of the research, including your gender, race, and ethnicity.
The All of Us Research Program may ask you to share your health data from wearable devices such as Fitbit, mobile applications, or data collected on your personal device, such as Apple HealthKit. In addition, we may ask you to share your EHR data from your health provider. The All of Us Research Program will store and use this data in support of health research. After sharing you may elect to stop sharing this data if you so choose.
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:
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.
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 and do not re-share outside their organization.
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
The All of Us Research Program implements policies, standards, and procedures which are consistent with government-wide laws and regulations, to assure an adequate level of protection for IT systems whether maintained in-house or commercially.
How
long will we keep your data?
We may keep a backup of all the data we collect from you. We need to keep backups and archives for disaster recovery purposes. However, these backups are synchronized with information in real-time, so they are updated every time there is an addition or deletion of your information.
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
Toll-free TTY-based Telecommunications Relay Service is available by dialing 711.
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.
Toll-free TTY-based Telecommunications Relay Service is available by dialing 711.
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.
Toll-free TTY-based Telecommunications Relay Service is available by dialing 711.
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.This means that privacy protections are different than in US.
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.
Toll-free TTY-based Telecommunications Relay Service is available by dialing 711.
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)
Version 6 (21 June 2021)