Educating extended family members about the inheritance of the fragile X syndrome
How to share information about the inheritance of the fragile X syndrome with other family members is a concern to many families. This paper describes a workshop from the 4th International Fragile X Conference in June 1994, which addressed this issue. Workshop participants included genetics professionals and fragile X family members. The primary focus of the workshop was to: (1) identify some of the challenges that families face when discussing genetic risk information about fragile X syndrome and (2) develop a plan for successfully disseminating appropriate information to family members. Several approaches to educating family members will be presented.