How to cite this article: Withrow KA, Tracy KA, Burton SK, Norris VW, Maes HH, Arnos KS, Pandya A. 2009. Impact of genetic advances and testing for hearing loss: Results from a national consumer survey. Am J Med Genet Part A 149A:1159–1168.
Impact of genetic advances and testing for hearing loss: Results from a national consumer survey†
Version of Record online: 15 MAY 2009
Copyright © 2009 Wiley-Liss, Inc.
American Journal of Medical Genetics Part A
Volume 149A, Issue 6, pages 1159–1168, June 2009
How to Cite
Withrow, K. A., Tracy, K. A., Burton, S. K., Norris, V. W., Maes, H. H., Arnos, K. S. and Pandya, A. (2009), Impact of genetic advances and testing for hearing loss: Results from a national consumer survey. Am. J. Med. Genet., 149A: 1159–1168. doi: 10.1002/ajmg.a.32800
- Issue online: 26 MAY 2009
- Version of Record online: 15 MAY 2009
- Manuscript Accepted: 8 FEB 2009
- Manuscript Received: 10 NOV 2008
- NIH. Grant Number: R01DC04294-01
- hearing loss;
- genetic testing;
- genetic counseling;
Hearing loss is a common neuro-sensory deficit; nearly 50% of children with hearing loss have a genetic etiology. With the discovery of 40 genes and more than 100 loci involved in hearing loss, genetic testing is becoming more widely available. The information obtained through genetic testing can be perceived and used in different ways by parents of deaf children and deaf adults, based on their prior knowledge and understanding of these advances. It is therefore important to clarify the feelings of these potential consumers towards genetic services for hearing loss and understand their goals for genetic testing. The present study evaluates the feelings of consumers towards the advances in the genetics of hearing loss, the motivations for pursuing testing, and the perceived impact testing may have on their lives. We surveyed 808 parents of children with hearing loss nationally and 156 young deaf adults at Gallaudet University. In this study, learning the etiology of the hearing loss was the most commonly cited motivation for pursuing genetic testing and for parents was the most commonly cited outcome that genetic testing may have on their children's lives. Culturally Deaf respondents were less likely to believe that genetic testing will impact their lives or their children's lives and were less likely to report positive feelings about advances in the genetics of hearing loss. Cultural affiliation and genetic testing status, rather than hearing status, contributed more to the participants' responses. © 2009 Wiley-Liss, Inc.