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)