From Genetic Counselling, Ethics, Nursing, Society

Genetic Counselling and the d/Deaf Community

This is one of two chapters Anna was invited to contribute to the book "The Effects of Genetic Hearing Impairment in the Family"

Genetic Counselling and the d/Deaf Community

1st January 2006

Chapter Introduction:

“This chapter discusses the practicalities of seeing d/Deaf clients within a clinical setting in the UK. This is considered within the context of issues surrounding genetic counselling, psychology of deafness and Deaf culture

There have been numerous excellent reviews of how to conduct an evaluation of the genetic/inherited basis of hearing loss within genetic counselling and so these will be considered the background to this chapter and will not be addressed in any specific detail here.

The culturally Deaf client may have a different perspective on genetics issues and also different communication needs from those who identify with the hearing world. So there may be particular considerations pertinent to a clinical service involving such clients. Therefore, this chapter gives attention to these issues and offerse information to help provide a Deaf-friendly genetic counselling service…”

Book Summary:

There has been an explosion of studies in the field of genetic hearing impairment in the past decade, associated with major advances in our understanding of the mechanisms and conditions involved. However, a recent review has highlighted the very limited number of studies on the effects of such hearing impairment on the individuals and families of those concerned.

In The Effects of Genetic Hearing Impairment in the Family, under the aegis of the European Union GENDEAF programme, the editors have taken the first steps to address this deficit in our knowledge and understanding of this topic. The book addresses the problem by secondary analyses of existing large scale population studies, by prospective investigation of individuals with a family history of hearing impairment and by specific studies on patients with otosclerosis and neurofibromatosis 2 and their families.

In addition several chapters look at the specific impact of deaf culture, ethnicity and religion on reactions to deafness and the specific needs in genetic counselling.

This book represents an important first step in this field and should be an invaluable resource for all professionals involved with people with hearing impairments.



Middleton A (2006) Genetic Counselling and the d/Deaf Community. In: D Stephens and L Jones (Eds). The Effects of Genetic Hearing Impairment in the Family. London: Wiley, pp 257-284