title: Deaf adults' reasons for genetic testing depend on cultural affiliation: results from a prospective, longitudinal genetic counseling and testing study.
abstract: 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.
authors.affiliation: California State University, USA.
authors.forename: Patrick
authors.initials: P
authors.lastname: Boudreault
authors.forename: Erin E
authors.initials: EE
authors.lastname: Baldwin
authors.forename: Michelle
authors.initials: M
authors.lastname: Fox
authors.forename: Loriel
authors.initials: L
authors.lastname: Dutton
authors.forename: Leeelle
authors.initials: L
authors.lastname: Tullis
authors.forename: Joyce
authors.initials: J
authors.lastname: Linden
authors.forename: Yoko
authors.initials: Y
authors.lastname: Kobayashi
authors.forename: Jin
authors.initials: J
authors.lastname: Zhou
authors.forename: Janet S
authors.initials: JS
authors.lastname: Sinsheimer
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Sininger
authors.forename: Wayne W
authors.initials: WW
authors.lastname: Grody
authors.forename: Christina G S
authors.initials: CG
authors.lastname: Palmer
mesh_terms: D001294:Attitude to Health; D000072259:Connexin 26; D000075302:Connexin 30; D017630:Connexins / Q000235:genetics; D003376:Counseling; D003469:Culture; D003638:Deafness / Q000235:genetics*; D005500:Follow-Up Studies; D005820:Genetic Testing; D006309:Hearing; D006801:Humans; D009042:Motivation; D010379:Peer Group; D011446:Prospective Studies; D012933:Social Identification; D011795:Surveys and Questionnaires
chemical_list: D000075302:Connexin 30; D017630:Connexins; C491020:GJB6 protein, human; D000072259:Connexin 26