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 = 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.
Boudreault
Patrick
P
California State University, USA.
Baldwin
Erin E
EE
Fox
Michelle
M
Dutton
Loriel
L
Tullis
Leeelle
L
Linden
Joyce
J
Kobayashi
Yoko
Y
Zhou
Jin
J
Sinsheimer
Janet S
JS
Sininger
Yvonne
Y
Grody
Wayne W
WW
Palmer
Christina G S
CG
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
D000075302:Connexin 30; D017630:Connexins; C491020:GJB6 protein, human; D000072259:Connexin 26