Deaf Adults' Reasons for Genetic Testing Depend on Cultural Affiliation: Results From a Prospective, Longitudinal Genetic Counseling and Testing Study

This article examines the relationship between cultural affiliation and deaf adults' motivations for genetic testing for deafness in the first prospective, longitudinal study to examine the impact of genetic counseling and genetic testing on deaf adults and the deaf community. Participants (n =...

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Bibliographic Details
Published in:	Journal of deaf studies and deaf education Vol. 15; no. 3; pp. 209 - 227
Main Authors:	Boudreault, Patrick, Baldwin, Erin E., Fox, Michelle, Dutton, Loriel, Tullis, LeeElle, Linden, Joyce, Kobayashi, Yoko, Zhou, Jin, Sinsheimer, Janet S., Sininger, Yvonne, Grody, Wayne W., Palmer, Christina G. S.
Format:	Journal Article
Language:	English
Published:	Cary, NC Oxford University Press 01-01-2010 Oxford Publishing Limited (England)
Subjects:	Adults American sign language Attitude Measures Attitude to Health Biological and medical sciences Children Community Relations Comparative Analysis Connexin 26 Connexin 30 Connexins - genetics Counseling Cultural Influences Culture Deaf culture Deaf education Deafness Deafness - genetics Ear, auditive nerve, cochleovestibular tract, facial nerve: diseases, semeiology Follow-Up Studies Fundamental and applied biological sciences. Psychology General aspects. Genetic counseling Genetic counseling Genetic Disorders Genetic Testing Genetics Handicap Hearing Hearing tests Human genetics Humans Learning Longitudinal Studies Medical genetics Medical sciences Motivation Non tumoral diseases Otorhinolaryngology. Stomatology Peer Group Prospective Studies Psychology and medicine Psychology. Psychoanalysis. Psychiatry Psychology. Psychophysiology Social Identification Special Section on Deaf Studies Surveys and Questionnaires Testing Human Genetic counseling Motivation Auditory disorder Genetics ENT disease Adult Medical screening Sensory handicap Genetic determinism Hearing loss
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Summary:	This article examines the relationship between cultural affiliation and deaf adults' motivations for genetic testing for deafness in the first prospective, longitudinal study to examine the impact of genetic counseling and genetic testing on deaf adults and the deaf community. Participants (n = 256), classified as affiliating with hearing, Deaf, or both communities, rated interest in testing for 21 reasons covering 5 life domains. Findings suggest strong interest in testing to learn why they are deaf, but little interest in using it for decisions about a partner or having children. Culturally mediated variation was also demonstrated. Deaf and both communities groups viewed testing as useful for more life domains than the hearing community group. Deaf and both communities had similar motivations related to further exploration, understanding, or strengthening of deafness. Motivations related to "hearing" were also relevant for both communities.We conclude that cultural affiliation is an important factor for constructing motivations for genetic testing.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	1081-4159 1465-7325
DOI:	10.1093/deafed/enq012