Journal of Genetic Counseling

, Volume 17, Issue 1, pp 129–138

Ethnic Differences in Parental Perceptions of Genetic Testing for Deaf Infants

Authors

    • Department of Psychiatry and Biobehavioral SciencesUniversity of California
    • Department of Human GeneticsUniversity of California
    • UCLA Semel Institute
  • Ariadna Martinez
    • Department of Psychiatry and Biobehavioral SciencesUniversity of California
  • Michelle Fox
    • Department of PediatricsUniversity of California
  • Yvonne Sininger
    • Department of Head and Neck SurgeryUniversity of California
  • Wayne W. Grody
    • Department of Human GeneticsUniversity of California
    • Department of Pathology and Laboratory MedicineUniversity of California
  • Lisa A. Schimmenti
    • Department of Pediatrics and Ophthalmology, Institute of Human GeneticsUniversity of Minnesota
Original Research

DOI: 10.1007/s10897-007-9134-z

Cite this article as:
Palmer, C.G.S., Martinez, A., Fox, M. et al. J Genet Counsel (2008) 17: 129. doi:10.1007/s10897-007-9134-z

Abstract

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.

Keywords

Connexin 26GJB2Genetic testingNewborn hearing screeningHearing lossHearing impairment

Copyright information

© National Society of Genetic Counselors, Inc. 2007