Genetic Counseling: A Consumers' View

TLDR

The study aims to investigate public comprehension and awareness of genetic counseling for families with cystic fibrosis, phenylketonuria, or Down syndrome. Researchers surveyed parents of affected families, asking questions to assess their understanding of the counseling they received. Results show that reproductive attitudes are more influenced by perceived disease burden than by precise risk knowledge; about half of families grasped the counseling, a quarter gained some insight, and a quarter learned little, with variation linked to counseling context, physician skill, and parents' biology knowledge and perceived usefulness.

Abstract

Abstract Parents of families containing children with cystic fibrosis, phenylketonuria, and Down's syndrome were asked questions designed to discover their understanding of the genetic counseling that they received. Evidence given by these families suggests that reproductive attitudes are determined more by the sense of burden imparted by the disease than by knowledge of its precise risk figures. Although all the families had been counseled, about 1/2 had a good grasp of the information given, 1/4 gained something, and 1/4 learned very little. This variation is probably due to differences in the contexts in which the counseling was provided, including variable skills of the physicians who provided it, but it is also associated with the knowledge of biology and the perception of the usefulness of the counseling that the parents brought to it. Investigation of public comprehension and awareness of this aspect of medical care thus appears to be necessary.