ABSTRACT
Genetic disorders almost invariably have a psychosocial impact on families. For example, Huntington’s disease (HD), with onset usually in adult life, has a major disorganizing effect which manifests itself in transgenerational psychiatric dysfunctions. Shame and guilt are promoted. The former is most clearly seen when the disorder is kept secret in the family. Guilt often emerges when individuals struggle to re-establish a sense of control and order in a situation where chance plays a major role.
Family systems dynamics in the context of genetic testing need to be better understood and appreciated. Homeostasis, the tendency for families to maintain or return to the status quo, and role differentiation are important processes to consider in families participating in genetic testing. In particular, the preselected patient phenomenon appears to be a common coping strategy used by family members to deal with adult-onset conditions. The consequences of disconfirming family expectations as a result of genetic testing need to be considered.
The role of the family as a protector of its members is an important consideration. The denial of symptoms in one member of the family by the entire unit may be an expression of the family’s need to play a protective role. This role is also discussed in relation to the predictive genetic testing of minors. Questions are raised as to the merit of such testing for disorders for which no treatment or cure currently exists. In the face of the growing reality of genetic technology and the increasing pressures on geneticists to test minors, there is a strong need for professionals, parents, interest groups and support organizations to work together to ensure and promote the psychological interests of children.
