Personal Information and Privacy

How does the Twin Registry protect my privacy?

Who has access to my personal information?

Under what circumstances will my information be released?

When you join the Washington State Twin Registry, you and your twin are each assigned a Twin Registry ID number. The link between your Twin Registry ID number and your name and other personal identifying information is kept in a password-protected database that is housed on a secure, password-protected computer network.

All paper forms that contain personal information are stored in locked cabinets in a locked office inside a secure building. All digital records with your personal information are stored in password-protected computer files on an internally secured server.

Access to your electronic and paper-based information will be given only to Twin Registry staff who have received extensive training in maintaining the confidentiality of personal information. We will never share your personal information with anyone outside of the Twin Registry, including your twin or any other family members, without your permission.

Only members of the Twin Registry team are allowed to contact you to invite you to participate in research studies. We would never give your name and contact information to any researcher without your permission. When you agree to participate in outside research studies, those studies assign study-specific ID numbers to you and your twin. These numbers are different from your Twin Registry ID numbers.

If a research study takes place at the University of Washington Medical Center, any health information obtained about you during the study is not placed in your medical record. We will never release your name, contact information, or health information to your employer, your insurance company, any direct marketing company, or any mailing list.

If publications or presentations result from research in which you participated, you will not be identified by name or any other personal identifier.