Genetic counseling

In spite of all that has been discussed, there are no hard data documenting what influences a couple's decision to have more children after the birth of a child with a genetic disorder. It is likely that recurrence risk does not play a major role. The difference between a 25 per cent and a 50 per cent recurrence risk with each pregnancy probably does not have a great deal of personal significance. However, the burden of a disease is something to which every couple can relate. They know how the disease has affected the living situation of their family, and that is very meaningful. Because genetic counseling services are not standardized and the prediction of the outcome of these services is so difficult to quantify, third parties have not been very agreeable to pay for genetic counseling. I think it is important, however, to realize that the standardization of procedures may be less important than the emotional support given to a couple during the difficult time after they have been informed that their child has a genetic disease.