Deaf community

Date: 1 January 1998

Is deafness a medical condition or a cultural phenomena? We explore the conversations that genetics has raised for d/Deaf and hard of hearing people.

Exploring attitudes of d/Deaf and hard of hearing people towards genetic testing in pregnancy has been a passion of Professor Anna Middleton’s going back many years. Her PhD thesis was on: “Attitudes of deaf adults and hearing parents of deaf children towards issues surrounding genetic testing for deafness” for which she was awarded  £100,000 three year personal NHS R&D Fellowship at University of Leeds. She built on this work as Chief/Principal investigator on an Department of Health project grant (now called NIHR), based at Cardiff University with a three-year funded project exploring why Deaf adults do not access genetic counselling services. Within this work she supervised well respected Deaf academic, Dr Steve Emery, who conducted interviews in sign language with Deaf participants. She has published heavily on the topic of access to and uptake of genetics services for deafness and has had a book on communication with d/Deaf people within a clinical setting, translated into Japanese.

Anna reports that the proudest achievement of her career is being the first person to publish empirical data on the attitudes of Deaf parents towards using pre-natal testing for deafness, with the preference for having deaf children. Since publishing this in 1998, the ethical conundrum has been publicised widely; it is a familiar, almost mainstream ethical issue discussed in relation to genetic testing taught on most Masters programmes on genetic counselling worldwide.