Deaf Community and Genetics

Anna Middleton, Wellcome Trust Sanger Institute, Cambridge, UK
Steve Emery, University of Bristol, Bristol, UK
Christina Palmer, University of California Los Angeles, Los Angeles, California, USA
Patrick Boudreault, University of San Francisco, San Francisco, California, USA

Published online: January 2013

DOI: 10.1002/9780470015902.a0005875.pub2

The Deaf community consists of a group of like minded people sharing a common sign language and culture. This community has a positive attitude toward being deaf. Typically, deafness is considered a strong part of linguistic and cultural identity and Deaf individuals do not wish to have treatments or a cure. Deaf people have concerns that a hearing society, with little knowledge or experience of their rich culture and language, would encourage the use of pre-implantation genetic diagnosis and prenatal genetic testing for deafness with the ultimate aim of having hearing children. They feel strongly that deafness is a source of human variation that does not warrant the use of genetic technology in this way. Deaf (written with an uppercase 'D') refers to people who belong to the Deaf community. Deaf people use sign language (e.g. British Sign Language, American Sign Language, Auslan, etc.) as their first or preferred language. They also have a positive identity attached to being Deaf. People who consider themselves deaf (written with a lowercase 'd') or hard of hearing tend to use speech as their preferred form of communication, and may experience being deaf as a medical disability that needs to be treated. These groups often have very differing attitudes towards the use of genetic technology.

Key Concepts:

  • Deaf people often do not mind if their children are deaf or hearing; whereas hearing or hard of hearing people typically prefer to have hearing children.
  • Genetic technology can be used to reduce the number of deaf children born, for example, via the use of preimplantation genetic diagnosis with a selection of embryos that contain the genes for hearing or via the use of prenatal genetic diagnosis where a termination of pregnancy is offered if the baby is found to have the genes for deafness.
  • There is a serious concern amongst the Deaf community that genetic technology will be ‘misused’ by hearing people to select against deafness. If significant number of people choose to use genetic technologies to facilitate the selection of hearing children then they fear that this will result in decline of the Deaf community.
  • If fewer deaf babies are born, Deaf people recognise that this may result in a decimation of their language and culture, and an increasing disregard for the rights of self-determination of deaf individuals.
  • Being deaf can arise as a result of different factors, genetics is only one of these. It is likely that there will always be environmental causes, newly arising genetic causes, and people who do not use genetic technology for diagnostic purposes, and so there will always be D/deaf people in society.

Keywords: deafness; attitudes; Deaf culture; prenatal genetic diagnosis; preimplantation genetic diagnosis

 References
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 Web Links
    ePath Deafhood and genetics: http://www.deafhoodgenetics.com/
    ePath Hereditary Hearing Loss home page: http://hereditaryhearingloss.org/
    ePath Overview of various BSL publications: http://www.bsluptake.org.uk/category/dr-steve-emery/
    ePath University of Manchester, information about genetic counselling in BSL: http://sites.mhs.manchester.ac.uk/what-is-genetic-counselling

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Article Title: Deaf Community and Genetics
 
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Middleton, Anna, Emery, Steve, Palmer, Christina, and Boudreault, Patrick(Jan 2013) Deaf Community and Genetics. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005875.pub2]