The explosion of hereditary cancer knowledge: Benefiting from a family information service

Both oncology professionals and the public at large are becoming more aware of hereditary cancer syndromes and the importance of genetic counseling and other cancer-prevention strategies in families at risk. A family information service (FIS) is a cost-effective and professionally satisfying means of communicating both good and bad news to a family carrying a deleterious, cancer-causing germline mutation. Often these mutations come to light through observation of the pattern of cancer in an extended family, based on clinical, pathologic, molecular genetic, and genealogic information gathered from the family. The FIS serves as a tool for informing not only immediate members of the family who might be affected but also distant relatives who may be totally unaware of their risk or even that they are part of the family. Participation in an FIS can be a way for cancer-prone families to discuss issues that affect them all in a highly effective, structured, and supportive manner - and that may even prove to be lifesaving. This article describes the mechanics of setting up an FIS and describes some of the rewarding experiences the authors have had conducting these sessions over the past several decades.