Emotional and Social Reactions to Genetic Disease

Abstract

Known genetic diseases are numerous (2336 according to the 1975 edition of McKusick’s catalog), ranging over virtually every clinical category, and varying from those whose impact is relatively minor (such as brachydatyly) to the very severe (e.g., osteogenesis imperfecta). Sometimes the disease afflicting them is already well known by individuals who seek genetic counseling since they or their relatives may have had the disease for some time (e.g., Marfan’s syndrome). At other times, individuals may be in the process of learning about the disease for the first time during genetic counseling, since their child may have just been diagnosed as having the disease or problem (e.g., Down’s syndrome or Tay-Sachs). Therefore, the genetic counselor can expect to encounter a wide range of reactions to genetic disease, depending on the situation, the severity of the disease, and when individuals learned of the problem.

Health is not a state of being; it is a process of adaptation to the changing demands of living and the changing meanings we give to life itself. D. Mechanic, 1966