All of Us

Privacy

What will the NIH do to protect your privacy?

Your privacy is very important, and the NIH will take great care to protect it if you join. Here are a few of the steps we will take:

  • Information collected will be stored on protected computers. The NIH will limit and keep track of who sees the information.
  • The NIH 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.
  • The NIH 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 the NIH 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. The NIH believes the chance of this is very small, but it is not zero.

Further information about All of Us privacy may be found here on the Join All of Us FAQ page.

NIH Privacy Videos

All of Us Research Program Director Eric Dishman
discusses the four primary ways the NIH is working to protect privacy

 

Sharing Your Electronic Health Record (EHR)

 

Security: Protecting Participant Data

NIH All of US Image

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