Impact of genetic counseling and Connexin-26 and Connexin-30 testing on deaf identity and comprehension of genetic test results in a sample of deaf adults: a prospective, longitudinal study.
Using a prospective, longitudinal study design, this paper addresses the impact of genetic counseling and testing for deafness on deaf adults and the Deaf community. This study specifically evaluated the effect of genetic counseling and Connexin-26 and Connexin-30 genetic test results on participants' deaf identity and understanding of their genetic test results. Connexin-26 and Connexin-30 genetic testing was offered to participants in the context of linguistically and culturally appropriate genetic counseling. Questionnaire data collected from 209 deaf adults at four time points (baseline, immediately following pre-test genetic counseling, 1-month following genetic test result disclosure, and 6-months after result disclosure) were analyzed. Four deaf identity orientations (hearing, marginal, immersion, bicultural) were evaluated using subscales of the Deaf Identity Development Scale-Revised. We found evidence that participants understood their specific genetic test results following genetic counseling, but found no evidence of change in deaf identity based on genetic counseling or their genetic test results. This study demonstrated that culturally and linguistically appropriate genetic counseling can improve deaf clients' understanding of genetic test results, and the formation of deaf identity was not directly related to genetic counseling or Connexin-26 and Connexin-30 genetic test results.
Department of Psychiatry & Biobehavioral Sciences, University of California Los Angeles, Los Angeles, California, United States of America; Department of Human Genetics, University of California Los Angeles, Los Angeles, California, United States of America; Institute for Society and Genetics, University of California Los Angeles, Los Angeles, California, United States of America.
Christina G S
CG
Palmer
Department of Deaf Studies, California State University Northridge, Northridge, California, United States of America.
Patrick
P
Boudreault
Department of Psychiatry & Biobehavioral Sciences, University of California Los Angeles, Los Angeles, California, United States of America.
Erin E
EE
Baldwin
Department of Human Genetics, University of California Los Angeles, Los Angeles, California, United States of America; Institute for Society and Genetics, University of California Los Angeles, Los Angeles, California, United States of America; Departments of Biomathematics and Biostatistics, University of California Los Angeles, Los Angeles, California, United States of America.
Janet S
JS
Sinsheimer
D000328:Adult; D000368:Aged; D000072259:Connexin 26; D000075302:Connexin 30; D017630:Connexins / Q000235:genetics*; D003638:Deafness / Q000235:genetics* / Q000523:psychology; D005260:Female; D005817:Genetic Counseling; D005820:Genetic Testing; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D019986:Persons with Hearing Disabilities / Q000523:psychology*; D011446:Prospective Studies; D012649:Self Concept; D012933:Social Identification
D000075302:Connexin 30; D017630:Connexins; C491020:GJB6 protein, human; D000072259:Connexin 26