Journal of Genetic Counseling

, Volume 16, Issue 6, pp 775–787 | Cite as

Parental Narratives About Genetic Testing for Hearing Loss: A One Year Follow Up Study

  • Girija Kaimal
  • Annie G. Steinberg
  • Sara Ennis
  • Sue Moyer Harasink
  • Rachel Ewing
  • Yuelin Li
Original Research


Few studies examine whether and how parental attitudes towards genetic testing change over time. In this study we interviewed parents of 14 children with newly identified hearing loss at two time points: after referral to genetics and 1 year later. Qualitative analyses of parental narratives indicate that parental attitudes did not change significantly over this time. Parents who perceived genetic testing to be useful continued to value it after testing, while parents who did not perceive it as being useful for their child’s future held the same view a year later. The only parents who changed their views regarding the usefulness of genetic testing for hearing loss were those who reported that their children underwent significant changes in their hearing loss or were faced with other life threatening conditions. Parents were also often unaware of the role of the genetic counselor and how genetic counseling could help address many of their lingering questions and concerns. These emergent themes indicate the need for geneticists and genetic counselors to be aware of and sensitized to the questions and attitudes that bring parents to a genetic evaluation, as well as the reasons why parents may not follow up with genetic testing for hearing loss when recommended.


Deafness Genetic testing Hearing loss Narratives Parental attitudes Qualitative research 



This research was part of an interdisciplinary study on outcomes of genetic testing for hearing loss funded by an NIH grant RO1 DC005247-01 (PI: I Krantz). We are grateful to Lisa Bain, Ian Krantz, and Dinah Yaeger for their contributions to this work.


  1. American College of Medical Genetics. (2002). Genetics evaluation guidelines for the etiologic diagnosis of congenital hearing loss: Genetic evaluation of congenital hearing loss expert panel. Genetics in Medicine, 4, 162–171.CrossRefGoogle Scholar
  2. Arnos, K. S. (1990). Special considerations in genetic counseling with the Deaf Population. Birth Defects Original Article Series, 26, 199–202.PubMedGoogle Scholar
  3. Arnos, K. S., Cunningham, M., Israel, J., & Marazita, M. L. (1992). Innovative approach to genetic counseling services for the deaf Population. American Journal of Medical Genetics, 44, 345–351.PubMedCrossRefGoogle Scholar
  4. Arnos, K. S., Israel, J., & Cunningham, M. (1991a). A model program for genetic counseling of the Deaf. Annals of the New York Academy of Sciences, 630, 317–318.PubMedCrossRefGoogle Scholar
  5. Arnos, K. S., Israel, J., & Cunningham, M. (1991b). Genetic counseling of the Deaf: Medical and cultural considerations. Annals of the New York Academy of Sciences, 630, 212–222.PubMedCrossRefGoogle Scholar
  6. Brunger, J. W., Murray, G. S., O’Riordan M., Matthews, A. L., Smith, R. J. H., & Robin, N. H. (2000). Parental attitudes toward genetic testing for pediatric deafness. American Journal of Human Genetics, 67, 1621–1625.PubMedCrossRefGoogle Scholar
  7. 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.PubMedCrossRefGoogle Scholar
  8. Jallinoja, P., Hakonen, A., Aro, A. R., Niemela, P., Hietala, M., Lonnqvist, J., et al. (1998). Attitudes towards genetic testing: Analysis of contradictions. Social Science & Medicine, 46, 1367–1374.CrossRefGoogle Scholar
  9. Kessler, S., Kessler, H., & Ward, P. (1984). Psychological aspects of genetic counseling. III. Management of guilt and shame. American Journal of Medical Genetics, 17, 673–697.PubMedCrossRefGoogle Scholar
  10. Marazita, M. L., Ploughman, L. M., Rawlings, B., Remington, E., Arnos, K. S., & Nance, W. E. (1993). Genetic epidemiological studies of early-onset deafness in the U.S. school-age population. American Journal of Medical Genetics, 46, 486–491.PubMedCrossRefGoogle Scholar
  11. Martinez, A., Linden, J., Schimmenti, L. A., & Palmer, C. G. S. (2003). Attitudes of the broader hearing, Deaf, and hard-of-hearing community toward genetic testing for deafness. Genetics in Medicine, 5, 106–112.PubMedCrossRefGoogle Scholar
  12. Maxwell, J. (1996). Qualitative research design: An interactive approach. California: Sage Publications.Google Scholar
  13. Michie, S., Drake, H., Bobrow, M., & Marteau, T. (1995). A comparison of public and professionals’ attitudes towards genetic developments. Public Understanding of Science, 4, 243–253.CrossRefGoogle Scholar
  14. Middleton, A., Hewison, J., & Mueller, R. F. (1998). Attitudes of deaf adults toward genetic testing for hereditary deafness. American Journal of Human Genetics, 63, 1175–1180.PubMedCrossRefGoogle Scholar
  15. Middleton, A., Hewison, J., & Mueller, R. F. (2001). Prenatal diagnosis for inherited deafness—What is the potential demand? Journal of Genetic Counseling, 10, 121–131.PubMedCrossRefGoogle Scholar
  16. Miles, M. B., & Huberman, M. (1996). Qualitative data analysis. New York: Sage Publications.Google Scholar
  17. Morton, N. E. (1991). Genetic epidemiology of hearing loss. Annals of the New York Academy of Sciences, 630, 16–31.PubMedCrossRefGoogle Scholar
  18. Smith, J., Augustine, K., Gamm, J., Yager, G., & Everett, J. (2005). Does the word “counseling” matter: Terminology in a genetics referral. Journal of Genetic Counseling, 15, 26.Google Scholar
  19. Stern, S. J., Arnos, K. S., Murrelle, L., Welch, K. O., Nance, W. E., & Pandya, A. (2002). Attitudes of Deaf and hard of hearing subjects toward genetic testing and prenatal diagnosis of hearing loss. Journal of Medical Genetics, 39, 449–453.PubMedCrossRefGoogle Scholar
  20. Strauss, A., & Corbin, J. (1998). Basics of qualitative research. Thousand Oaks, CA: Sage Publications.Google Scholar
  21. Van Camp, G., Willems, P. J., & Smith, R. J. (1997). Nonsyndromic hearing impairment: Unparalleled heterogeneity. American Journal of Human Genetics, 60, 758–764.PubMedGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2007

Authors and Affiliations

  • Girija Kaimal
    • 1
  • Annie G. Steinberg
    • 1
  • Sara Ennis
    • 2
  • Sue Moyer Harasink
    • 3
  • Rachel Ewing
    • 1
  • Yuelin Li
    • 4
  1. 1.Deafness and Family Communication CenterThe Children’s Hospital of PhiladelphiaPhiladelphiaUSA
  2. 2.Nemours Biomedical Research, Division of Medical GeneticsA.I. duPont Hospital for ChildrenWilmingtonUSA
  3. 3.Clinical Genetics SectionSt. Christopher’s Hospital for ChildrenPhiladelphiaUSA
  4. 4.Department of Psychiatry and Behavioral SciencesMemorial Sloan-Kettering Cancer CenterNew YorkUSA

Personalised recommendations