Illinois Precision Medicine Consortium

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

• Information we collect will be stored on protected computers. We will limit and keep track of who sees the information.
• We 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.
• We 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 us 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. We believe the chance of this is very small, but it is not zero.

If you join, you will be contributing to research that may improve health for everyone. Our goal is to understand why people get sick or stay healthy.

Also, you will be able to see your All of Us Research Program information, which might be interesting to you. You may also learn about your health. If you choose, you will be able to share your All of Us information with your health care provider.

Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, your genes, and your family health history. The goal of precision medicine is to be able to tell people the best ways to stay healthy.