Genetic Counseling

Receiving a diagnosis of a genetic disorder can have profound impact for both patients and their family members, and it quickly became clear that aside from the need for medical and genetic information, families affected by genetic disorders had educational, social, and psychological needs that required attention. And though families were afflicted with different disorders passed on by different modes of inheritance (autosomal recessive, autosomal dominant, complex, or some other type), certain reactions were observed again and again.

For instance, some parents of children with an autosomal recessive disorder felt profound guilt at having transmitted an inherited disorder to their child. On the other hand, a family member who was spared a genetic disorder that other family members developed frequently suffered "survivor guilt." Health-care providers also noted that family members at risk for developing a late-onset disorder live with intense anxiety about the future and often needed support and counseling. Finally, counseling was seen to be of potential help for family members who incorrectly inferred that they were at risk for having a child with a genetic disorder. Attempts to meet these varied needs and help give people a sense of control over their situation resulted in the emergence of a model of genetic education and support that came to be called genetic counseling.