Your privacy is important.
We take your privacy very seriously. We use the latest technology to help keep your data private and safe. When you provide personal information, your name and other direct identifiers will be removed and replaced with a unique code.
Our rigorous security models help ensure data is protected and used ethically and responsibly.
Frequently Asked Questions (FAQs)
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If you join the All of Us Research Program at UAB Medicine, we will collect basic facts, such as your name, birthday, and email address. We will ask about your ancestry, gender, and education. We may also ask if you want to give us your physical measurements or blood and urine samples. If you have an electronic health record, we may ask for access to it. Everything will be stored securely.
The All of Us Research Program follows privacy and data security rules. The rules lay out the best ways to keep your information private and safe. They also guide how we collect data and work with participants.
Your personal information will be kept private. We will create a database that everyone can use to make discoveries. The information that is public will be about the group of participants. For example, it might show the number of All of Us participants in your state or the average age of people who have joined. No one will be able to use this information to identify you.
The All of Us Research Program will take great care in deciding who can use your information. To use your information, researchers must explain what they plan to do, what they hope to learn, and why their study would be useful.
Only researchers approved by the All of Us Research Program will be allowed to see data from individual participants. Researchers who can see individual participant data will not be able to see names or other information that could identify someone directly. These researchers will have to go through training. They must sign a code of conduct agreeing to respect the All of Us Research Program values and rules. They will have to promise not to try to find out who any of the people participating in the All of Us Research Program at UAB Medicine are.
The All of Us Research Program works to keep your information safe. However, there is a chance of a security breach in any information-sharing setting. If a breach is a risk to your privacy, we will tell you. We will tell you about the information that was exposed and share steps you can take to protect your privacy in the future.
You can learn more about the program by calling (833) JOIN-UAB, emailing firstname.lastname@example.org or visiting one of our partner sites.
Your information will be stored in several places. These include:
• The place where you sign up (if you enroll at a clinic or through your health care provider organization).
• The place where you give your physical measurements and samples (if you choose to).
• The All of Us Data and Research Center.
• The All of Us Participant Technology Systems Center
There may be times when we will have to give someone your information. This may include information that identifies you, like your name. We may do this to obey U.S. laws and regulations. Most often, this information is given to protect your health or the health of others. For example, we might do this if we learn that you have a disease that is a risk to public health, like measles.
If we have to give out your information, we will try to give out as little as possible and still obey the law. We will also do our best to tell you if we had to give out your information.
Researchers must agree to follow certain rules before they can access All of Us Research Program data that is not public. Researchers who break those rules will be punished. The All of Us Resource Access Board will review what happened and decide on a punishment. Punishments could range from blocked data access to criminal penalties.
No. All of Us will not sell your information to anyone. But because we are a research program, we will share the data that participants give us to help researchers. The researchers who use this data may study many topics. They may come from universities, school groups, drug companies, and other places. Before using your information, researchers must share why and how they will use the information.
We hope that researchers will use this information to make discoveries. If their research leads to new tests, drugs, or other commercial products, you will not get any profits. These inventions will be the property of the researchers or the places where they work.
If you decide to leave the program, you will have two choices. You can let the All of Us Research Program keep using your samples and information for new studies, or you can make them unavailable.
If you choose the first option, researchers can still use the information you have already contributed.
If you choose the second option, your information will not be used for new studies. We will destroy your samples. We will remove your information the next time we update the database. Once that happens, researchers who get All of Us data cannot get your data. If researchers already have your information, we at All of Us cannot get it back.
Also, we will let researchers check the results of past studies. If they need your old data to do this work, we will give it to them.
In both cases, we will keep your name and contact information. We keep this information so we can follow U.S. research laws and regulations.
After you submit your change, you will receive a message that confirms your decision.