From Deaf Community

Parents’ attitudes towards genetic testing and the impact of deafness in the family

Anna was invited to contribute this chapter to the book "The Impact of Genetic Hearing Impairment"

Parents’ attitudes towards genetic testing and the impact of deafness in the family

1st January 2005

Book Summary:

This book addresses the impact of genetic deafness/hearing impairment on people’ s lives and those around them. It includes the perspectives of those who are deaf or hard of hearing as well as those working in the field. Professional topics include genetic counselling, social science, psychology, social work and – within medicine – audiological and ENT medical and audiological paediatrics. These practitioners are both hearing and hearing impaired.

The impact of deafness on children, those of working age and elderly people is discussed highlighting the specific effect of genetic factors. In particular there are chapters on deafblindness and otosclerosis and NF2 (a potentially lethal condition). The Who definitions and ICF are used as a framework for considering the effect on people’ s lives of impairment and their participation in society.

This provides a bridge between the medical and social models of disability. Contributors write from both their professional and personal experience in order to try and address some of the issues raised by the real impact of genetic deafness on everyday life and how these can best be tackled by those working in the field.

Citation:

Middleton A (2005) Parents’ attitudes towards genetic testing and the impact of deafness in the family. In: D Stephens and L Jones (Eds). The Impact of Genetic Hearing Impairment. London: Whurr, pp 11-53