ABSTRACT
The Genetic Interest Group (GIG) is the national alliance of charities, voluntary organizations, and support groups which serve those affected by specific genetic disorders and their families. This chapter principally addresses the issue on which opinion was and remains divided —childhood testing for carrier status. It believes that adult-onset conditions, for which there are no pre-symptomatic medical treatments, are totally different from childhood ones. The argument that testing of the child takes away their right to make an informed decision as an adult overrides all other considerations. The GIG stance on adult-onset conditions illustrates that GIG is not asking for parents to be allowed to test for anything at all times. Rather, GIG believes that an element of flexibility is needed on the specific issue of childhood testing for carrier status. There have been very few studies of the effects of carrier testing during childhood. The assumption of possible harm is just that – an assumption.
