Experiences and attitudes concerning genetic testing and insurance in a Colorado population: a survey of families diagnosed with fragile X syndrome.

This study examined the relationship between diagnosis, experience with insurance underwriting, and perceptions of difficulties with insurance in genetically tested families. Discrimination was strictly defined as the misuse of genetic information in underwriting. Forty-eight families received a survey and thirty-nine (81%) responded. No insurance cancellations were reported although many families believed that it happened often. The fear evidenced by the respondents was out of proportion to the experiences and 66% of the families reported moderate to moderate to extreme worry over losing health insurance. Genetic counselors and others involved in caretaking of diagnosed families must expand their roles to assist in providing access to local resources and information concerning insurance issues and other social issues. Addressing medical issues alone will not provide the assistance these families require.