The database is one of the tools used by U. researchers who identified a mutation responsible for some breast cancer, a gene mutation that leads to melanoma, a genetic mutation in colon cancer and a prostate cancer susceptibility gene, among others.

Most families living in Utah are represented in the database, with many family histories that can trace back as far as 10 generations. Information from the database is merged with the newer vital records so that new generations are always being added to existing families in the database. One family in the database, for example, spans 10 generations, from 1807 to 2003. The couple had 12 children and their descendants now number 3,764.

Privacy is a very big deal with the database, said Mineau. Although records are linked within it, no identifiable information is shared with anyone — including researchers on different studies — without permission, she said. Families may be invited to participate in specific studies based on information in the database. On the other hand, people may be added to the database as a result of being recruited into studies.

Studies that use the database have to have institutional review board oversight and guidelines. The studies using information from the database pay a small fee for access and the actual cost of a programmer's time so it's very available to researchers, Mineau said. And they keep track of their own study materials, such as questionnaires and blood samples.

---

E-mail: lois@desnews.com