The role of genetic counseling in visually impaired adolescents

The presence of genetic disorders in a high percentage of adolescents with significant visual impairments emphasizes the important role that genetic counseling can play in this population. However, its intended goals have been controversial. Responses to structured interviews about genetic counseling services from three groups of former students from the Kentucky School for the Blind were compared. One group consisted of students who had received genetic counseling; another, of students who had declined it; and a third, of students who had graduated before the service was available. In all groups, genetic counseling was viewed as a valuable service which would have been pursued by the majority of those who did not have the opportunity to receive it, and by many of those who refused it initially. Although genetic counseling did little to enhance knowledge of the cause of the specific visual impairment, it appeared to be useful in providing information regarding the risk of visual impairment in future offspring. A relatively high rate of unplanned pregnancies was noted in the group who had refused genetic counseling. The significance of this observation is uncertain. One interpretation is that the group refusing genetic counseling may have consisted of individuals who had fewer concerns as adolescents about family planning issues. These observations suggest that it may be appropriate to recommend to adolescents with significant visual impairments to defer childbearing until independent life experiences are accumulated outside the school setting. Then, prior to considering childbearing, genetic counseling should be sought.