Family information service (FIS) in a BRCA1 extended family

Abstract

1028 Background: Considering that 10% of breast cancer is hereditary, it is essential to effectively educate hereditary cancer family members regarding the syndrome, cancer risk, genetic testing and cancer control options. Researchers at Creighton University (CU) have for many years provided family (group-oriented) information services (FISs) for hereditary cancer families. Methods: Such a session was held in collaboration with a genetic counselor in a community where many members of an extended hereditary breast-ovarian cancer family with a known BRCA1 mutation reside. Family members helped contact relatives and invited them to attend the full-day FIS at a local hospital. Informal presentations were provided by a CU geneticist/oncologist, a CU nurse counselor, and a local genetic counselor. Questions and comments were encouraged. An opportunity to provide a blood sample for genetic testing was offered. Results: Contacting relatives for the FIS identified more than 400 family members from previously unknown branches. Many attendees indicated this was their first opportunity to learn about this hereditary cancer syndrome, their risk, and recommended cancer control options. Patient-stated benefits of the FIS included increased communication of cancer risk among family members as well as with their physicians, motivation to become more vigilant with screening and health management and receipt of initial cancer risk education in a non-threatening venue. Conclusions: The FIS is a relatively simple, cost-effective educational cancer control program that increases communication among family members and their physicians, educates high-risk individuals and provides an opportunity for genetic testing which will ultimately provide an accurate cancer risk status and thereby alter health management and cancer control strategies. No significant financial relationships to disclose.