Genetic counseling is undertaken to provide clients with medical and genetic """"""""facts"""""""" that will be incorporated into the reproductive and parenting decision making process. The question which remains unanswered is whether genetic counseling has this anticipated result. This study is designed to test the following null hypothesis: Information imparted during genetic counseling has no effect upon subsequent client reproductive/parenting decision making or their evaluation of the subjective expected utility of subsequent children.
The specific aims of the project are: (1) to identify the reproductive and contraceptive behavior of couples before and after genetic counseling; and (2) to delineate clients' perception and definition of the reproductive and parenting decision making process (how they arrive at their choice and the factors they consider important) and assess parental evaluation of the subjective expected utility of subsequent children following counseling. The subject population of this study will include an estimated 4,500 individuals of both sexes, over the age of 18, representing all ethnic groups. The criterion for inclusion in the study is that these persons have either received or been referred for genetic counseling. Only non-English speakers or individuals at risk because of exogenous factors will be excluded from selection. Use will be made of existing computerized records of individuals who have received genetic counseling in order to (1) develop a patient population profile, (2) provide data relating to reproduction and contraception before and after genetic counseling and (3) provide the basis for selecting a sample population for subsequent study. This sample of 200 probands will be selected at random to participate in a series of in-depth interviews to assess client felt needs, satisfaction, and to identify bio-medical and socio-cultural parameters that influence decision making and the perception of the subjective expected utility of having children in relation to genetic risk.
