Genetic Counseling

This entry explores genetic counseling services: what they are and how they may be of use to deaf people, but also the ambivalence and concern with which they are viewed by some within the Deaf community and the underlying reasons for these concerns.

Genetic counseling is a service for individuals or families who have questions or worries about a condition within their personal or family history that may be genetic. They may be self-referred or referred by a health care professional. The genetic counseling professional that they meet may be a doctor or other health care professional such as a genetic counselor or nurse with special training in genetics. Genetic counseling is a process that involves gathering family history information from the individual attending; discussing relevant genetic and other tests; explaining the cause of the condition and the chances of the condition happening again within the family; and providing support and discussion around the individual’s decisions such as whether or not to pursue genetic testing, whom to share genetic test results with, or how to use genetic information in major life decisions. It does not usually involve long-term psychotherapeutic counseling, so the name genetic counseling is sometimes misunderstood. Modern genetic counseling services, particularly in Northern Europe, North America, and Australasia, have nondirectiveness and individual autonomy as their predominant guiding principles. In other words, genetic counselors attempt to provide balanced and thorough information and unbiased support to allow individuals to make independent decisions that are right for them given their beliefs, culture, and experience of the condition. Family experiences of conditions vary greatly and, coupled with individual coping mechanisms and the family composition and other attributes, necessitate a service that is capable of responding in a highly individualized way.

Nevertheless, because genetic counseling services are provided to individuals and families with many serious and life-threatening genetic illnesses, genetic counseling has historically evolved and been situated within medical services. This means that genetic service providers may be perceived as also taking a medical perspective toward non–life-threatening conditions or traits such as being deaf.