Ethnic Differences in Parental Perceptions of Genetic Testing for Deaf Infants
- 265 Downloads
As genetic testing becomes an integral part of the evaluation of deaf infants and children, it is important to understand parental views on genetic testing. The purpose of this study is to examine parental reasons for, and beliefs about, genetic testing for deafness in early-identified infants, and to determine if they differ as a function of ethnicity. We present baseline data collected from 56 Caucasian, 59 Hispanic, and 24 Asian parents of deaf children participating in a longitudinal, prospective study on genetic testing for connexin-related deafness. The overall finding is that reasons for, and beliefs about, genetic testing for deafness varied as a function of ethnicity. Virtually all parents sought genetic testing to understand why their child is deaf. However, Asian and/or Hispanic parents were more likely than Caucasian parents to view family planning, helping with their child’s medical care, and helping the family as other important reasons for testing, and were more likely than Caucasian parents to perceive genetic testing to be useful for these purposes. Asian and Hispanic parents were more likely than Caucasian parents to perceive genetic testing in harmful terms. Genetic testing fulfills a cognitive need for parents to understand why their child is deaf, yet differences in responses suggest that Asian and Hispanic parents may seek testing for other purposes. Understanding different perspectives on genetic testing for deafness will enhance genetic counselors’ cultural competence and facilitate the pre-test genetic counseling session.
KeywordsConnexin 26 GJB2 Genetic testing Newborn hearing screening Hearing loss Hearing impairment
This research was supported by National Institute on Deafness and Other Communication Disorders Grant DC005663. The authors are grateful to the participating families who generously gave their time and support to allow performance of this study.
- Box, G. E. P., Hunter, W. G., & Hunter, J. S. (1978). Statistics for experimenters. New York: Wiley.Google Scholar
- Dagan, O., Hochner, H., Levi, H., Raas-Rothschild, A., & Sagi, M. (2002). Genetic testing for hearing loss: Different motivations for the same outcome. American Journal of Medical Genetics, 113, 137–143.Google Scholar
- del Castillo, I., Moreno-Pelayo, M. A., Del Castillo, F. J., Brownstein, Z., Marlin, S., & Adina, Q., et al. (2003). Prevalence and evolutionary origins of the del(GJB6-D13S1830) mutation in the DFNB1 locus in hearing-impaired subjects: A multicenter study. American Journal of Human Genetics, 73, 1452–1458.PubMedCrossRefGoogle Scholar
- Glanz, K., Grove, J., Lerman, C., Gotay, C., & Le Marchand, L. (1999). Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiology, Biomarkers & Prevention, 8, 329–336.Google Scholar
- Gorlin, R. J., Toriello, H. V., & Cohen Jr., M. M. (1995). Hereditary hearing loss and its syndromes. New York: Oxford University Press.Google Scholar
- Joint Committee on Infant Hearing (2000). Year 2000 position statement. Audiology Today, 3, 23.Google Scholar
- Marlin, S., Garabedian, E. N., Roger, G., Moatti, L., Matha, N., & Lewin, P., et al. (2001). Connexin 26 gene mutations in congenitally deaf children. Archives of Otolaryngology, Head & Neck Surgery, 127, 927–933.Google Scholar
- Modell, B. (1997). Kinship and medical genetics: A clinician's perspective. In A. Clarke, & E. Parsons (Eds.) Culture, kinship and genes (pp. 27–39). London: Macmillan.Google Scholar
- Palmer, C. G. S., Carlstrom, L. K., & Woodward, J. A. (2001). Risk perception and ethnicity. Risk Decision & Policy, 6, 187–206.Google Scholar
- SAS (2002). SAS (Version 9.1). Cary, North Carolina: SAS Institute Inc.Google Scholar
- Zelante, L., Gasparini, P., Estivill, X., Melchionda, S., D'Agruma, L., & Govea, N., et al. (1997). Connexin 26 mutations associated with the most common form of non-syndromic neurosensory autosomal recessive deafness (DFNB1) in Mediterraneans. Human Molecular Genetics, 6, 1605–1609.PubMedCrossRefGoogle Scholar