Personal Information and Privacy

Privacy is of the utmost concern for the Washington State Twin Registry. We take many approaches to protect the confidentiality of the identity and data of our twin members. When a twin pair joins the Registry, each twin is assigned a Registry ID number. The link between the ID numbers and names and other personal identifiers is kept in a password-protected database residing on a secure, password-protected computer network. Only Twin Registry staff have access to this database.

Twins may sometimes be contacted to participate in specific research studies. In general, only members of the Twin Registry team are allowed to make the first contact with our members. We never provide twins’ contact information to any researcher without the twins’ permission. When twins agree to participate in outside research studies, the studies assign study-specific ID numbers to each twin. These numbers are also completely confidential.

Any publications or presentations resulting from research done through the Twin Registry never identify participants by name, identifier, or personal data. Any health information obtained is not placed in medical records. We will never release your name, contact information, or health information to your employer, insurance company, direct marketing company, or mailing list.