Privacy is of the utmost concern for the UW 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 UW 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 UW 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.
If publications or presentations result from research done through the UW Twin Registry, participants are never identified by name or by any other personal data.