Privacy First, Privacy Always
The All of Us Research Program is committed to protecting your privacy. The NIH has partnered with leading experts in privacy, bioethics, civil liberties, and technology. All research data will be de-identified. This means names, addresses, and other identifying information will be removed.
Where Does Your Data Go?Your personal information, like your name, address, and other things that easily identify you will be removed from all of the data. The data is then sent directly to a secure cloud-based database, managed by the All of Us Data and Research Center at Vanderbilt University Medical Center.
To support the collection and storage of blood and urine samples, All of Us has partnered with the Mayo Clinic, which has created a specialized facility just for All of Us biosamples.
All of Us uses cutting-edge security technology to help keep participant data safe.
The data that participants give to the All of Us Research Program is personal. We know that. And we respect that. Which is why we are serious about privacy and security.
The data that participants will provide is varied. It may include data about lifestyle, environment, and biological makeup, including genes. Researchers will use this to help understand disease and make prevention strategies and treatments as unique as we are.
The All of Us Research Program is using the most rigorous security models so that participants can trust that their data is protected. It will also ensure data is used ethically and responsibly to improve health for generations to come.
Below are some of the specific steps the All of Us Research Program is taking to protect participant information. The All of Us Research Program requires:
- Research Program partner organizations to show that they can meet strict data security standards before they may collect, transfer, or store information from participants.
- Encryption of all participant data, and keep participants’ names, addresses, and other identifying information separate from their health information.
- Researchers seeking access to All of Us Research Program data to first register with the program, take the ethics training, and agree to a code of conduct for responsible data use.
- Data be available on a secure platform—the All of Us research portal—and track the activity of all researchers who use it.
For more details, please see the Precision Medicine Initiative Data Security Policy Principles and Framework (PDF) and Privacy and Trust Principles (PDF).
All of Us is a service mark of the U.S. Department of Health & Human Services (HHS).
The All of Us platform is for research only and does not provide medical advice, diagnosis or treatment.