Journal of Genetic Counseling

, Volume 19, Issue 2, pp 161–173 | Cite as

Examining the Relationship Between Genetic Counselors’ Attitudes Toward Deaf People and the Genetic Counseling Session

  • Emily E. Enns
  • Patrick Boudreault
  • Christina G. S. PalmerEmail author
Original Research


Given the medical and cultural perspectives on deafness it is important to determine if genetic counselors’ attitudes toward deaf people can affect counseling sessions for deafness genes. One hundred fifty-eight genetic counselors recruited through the National Society of Genetic Counselors Listserv completed an online survey assessing attitudes toward deaf people and scenario-specific comfort levels discussing and offering genetic testing for deafness. Respondents with deaf/Deaf friends or who work in prenatal or pediatric settings had more positive attitudes toward deaf people than those without deaf/Deaf friends or those working in ‘other’ settings. More positive attitudes toward deaf people correlated with higher comfort level talking about genetic testing for the two scenarios involving culturally Deaf clients; and correlated with higher comfort level offering genetic testing to culturally Deaf clients wishing to have a deaf child. Attitudes and comfort level were not correlated in the scenarios involving hearing or non-culturally deaf clients. These results suggest that genetic counselors’ attitudes could affect information provision and the decision making process of culturally Deaf clients. Cultural sensitivity workshops in genetic counseling training programs that incorporate personal interactions with culturally Deaf individuals are recommended. Additional suggestions for fostering personal interactions are provided.


Genetic testing Prenatal testing Deaf Deaf culture Hearing impaired Hearing loss 



We thank the genetic counselors who participated in this study. This research was supported, in part, by funding from the National Human Genome Research Institute (R01 HG003871).

Open Access

This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.


  1. Arnos, K. S., Cunningham, M., Israel, J., & Marazita, M. L. (1992a). Innovative approach to genetic counseling services for the deaf population. American Journal of Medical Genetics, 44, 345–351.CrossRefGoogle Scholar
  2. Arnos, K. S., Israel, J., Devlin, L., & Wilson, M. P. (1992b). Genetic counseling for the deaf. Otolaryngology Clinics of North America, 25, 953–971.Google Scholar
  3. Bach, J. R., & Tilton, M. C. (1992). Ventilator use by muscular dystrophy association patients: an update. Archives of Physical and Medical Rehabilitation, 73, 179–183.Google Scholar
  4. Bauman, H.-D. L. (2005). Designing deaf babies and the question of disability. Journal of Deaf Studies and Deaf Education, 10, 311–315.CrossRefGoogle Scholar
  5. Brunger, J. W., Murray, G. S., O’Riordan, M., Matthews, A. L., Smith, R. J., & Robin, N. H. (2000). Parental attitudes toward genetic testing for pediatric deafness. American Journal of Human Genetics, 67, 1621–1625.CrossRefGoogle Scholar
  6. Burton, S. K., Withrow, K., Arnos, K. S., Kalfoglou, A., & Pandya, A. (2006). A focus group study of consumer attitudes toward genetic testing and newborn screening for deafness. Genetics in Medicine, 8, 779–783.CrossRefGoogle Scholar
  7. Christiansen, J. B. (1991). Sociological implications of hearing loss. Annals of the New York Academy of Sciences, 630, 230–235.CrossRefGoogle Scholar
  8. Cooper, A., Rose, J., & Mason, O. (2003). Mental health professionals’ attitudes toward people who are deaf. Journal of Community & Applied Social Psychology, 13, 314–319.CrossRefGoogle Scholar
  9. Cooper, A., Rose, J., & Mason, O. (2004). Measuring the attitudes of human service professionals toward deafness. American Annals of the Deaf, 148, 385–389.CrossRefGoogle Scholar
  10. 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.CrossRefGoogle Scholar
  11. Denoyelle, F., Weil, D., Maw, M. A., Wilcox, S. A., Lench, N. J., Allen-Powell, D. R., et al. (1997). Prelingual deafness: high prevalence of a 30delG mutation in the connexin 26 gene. Human Molecular Genetics, 6, 2173–2177.CrossRefGoogle Scholar
  12. Dovidio, J. F., Gaertner, S. L., & Kawakami, K. (2003). Intergroup contact: the past, present, and the future. Group Processes & Intergroup Relations, 6, 5–21.CrossRefGoogle Scholar
  13. Emery, S., Burke, T. B., Middleton, A., Belk, R., & Turner, G. (2008). Reproductive liberty and deafness: clause 14(4)(9) of embryo bill should be amended or deleted. British Medical Journal, 336, 976.CrossRefGoogle Scholar
  14. Finesilver, S. G. (1962). They can’t hear, but they get the message. California News, 77, 1–5.Google Scholar
  15. Guillemin, M., & Gillam, L. (2006). Attitudes to genetic testing for deafness: the importance of informed choice. Journal of Genetic Counseling, 15, 51–59.CrossRefGoogle Scholar
  16. Israel, J., Cunningham, M., Thumann, H., & Arnos, K. S. (1992). Genetic counseling for deaf adults: communication/language and cultural considerations. Journal of Genetic Counseling, 1, 135–153.CrossRefGoogle Scholar
  17. Johnson, R. E., & Erting, C. (1989). Ethnicity and socialization in a classroom for deaf children. In C. Lucas (Ed.), The sociolinguistics of the deaf community. San Diego: Academic Press Inc.Google Scholar
  18. Kenneson, A., Van Naarden Braun, K., & Boyle, C. (2002). GJB2 (connexin 26) variants and nonsyndromic sensorineural hearing loss: A HuGE review. Genetics in Medicine, 4, 258–274.CrossRefGoogle Scholar
  19. Kiger, G. (1997). The structure of attitudes toward persons who are deaf: emotions, values, and stereotypes. Journal of Psychology, 131, 554–560.CrossRefGoogle Scholar
  20. Lane, H. L. (1992). The mast of benevolence: Disabling the deaf community (1st ed.). New York: Knopf.Google Scholar
  21. Lane, H. (2005). Ethnicity, ethics, and the deaf-world. Journal of Deaf Studies and Deaf Education, 10, 291–310.CrossRefGoogle Scholar
  22. Lane, H., & Grodin, M. (1997). Ethical issues in cochlear implant surgery: an exploration into disease, disability, and the best interests of the child. Kennedy Institute of Ethics Journal, 7, 231–251.CrossRefGoogle Scholar
  23. Little, R. J. A., & Rubin, D. B. (1989). Statistical analysis with missing data. New York: Wiley.Google Scholar
  24. 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.CrossRefGoogle Scholar
  25. McCarthy Veach, P., LeRoy, B. S., & Bartels, D. M. (2003). Facilitating the genetic counseling process: A practice manual. New York: Springer.Google Scholar
  26. 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.CrossRefGoogle Scholar
  27. 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.CrossRefGoogle Scholar
  28. Middleton, A., Emery, S., Turner, G. H., Clarke, A., Sarangi, S., Bitner-Glindzicz, M., et al. (2008). Why don’t deaf people come for genetic counselling? Quantitative and qualitative findings from a UK study. Philadelphia: Paper presented at the American Society of Human Genetics annual meeting.Google Scholar
  29. Mitchell, R. E., & Karchmer, M. A. (2004). Chasing the mythical ten percent: parental hearing status of deaf and hard of hearing students in the United States. Sign Language Studies, 4, 138–163.CrossRefGoogle Scholar
  30. Mitchell, R. E., Young, T. A., Bachleda, B., & Karchmer, M. A. (2006). How many people use ASL in the United States? Why estimates need updating. Sign Language Studies, 6, 306–335.CrossRefGoogle Scholar
  31. Ormond, K. E., Gill, C. J., Semik, P., & Kirschner, K. L. (2003). Attitudes of health care trainees about genetics and disability: issues of access, health care communication, and decision making. Journal of Genetic Counseling, 12, 333–349.CrossRefGoogle Scholar
  32. Padden, C., & Humphries, T. (2005). Deaf in America: Voices from a culture. Cambridge: Harvard University Press.Google Scholar
  33. Parrot, S., & Del Vecchio, M. (2007). Professional Status Survey 2006. Accessed 1/30/2009.
  34. Rebagliato, M., Cuttini, M., Broggin, L., Berbik, I., de Vonderweid, U., Hansen, G., et al. (2000). Neonatal end-of-life decision making: physician’s attitudes and relationship with self-reported practices in 10 European countries. Journal of the American Medical Association, 284, 2451–2459.CrossRefGoogle Scholar
  35. Roydhouse, N. (1967). Deafness and driving. New Zealand Medical Journal, 66, 878–881.PubMedGoogle Scholar
  36. SAS. (2002). SAS (Version 9.1). Cary: SAS Institute Inc.Google Scholar
  37. Schein, J. D., & Delk, M. T., Jr. (1974). The deaf population of the United States. Silver Spring: National Association of the Deaf.Google Scholar
  38. Shaw, A., Randolph, J. G., & Manard, B. (1977). Ethical issues in pediatric surgery: a national survey of pediatricians and pediatric surgeons. Pediatrics, 60, 588–599.PubMedGoogle Scholar
  39. Shiloh, S. (1996). Decision making in the context of genetic risk. In T. M. Marteau & M. Richards (Eds.), The troubled helix: Social and psychological implications of the new human genetics. New York: Cambridge University Press.Google Scholar
  40. Shiloh, S., & Sagi, M. (1989). Effect of framing on the perception of genetic recurrence risks. American Journal of Medical Genetics, 33, 130–135.CrossRefGoogle Scholar
  41. Steinberg, A., Kaimal, G., Ewing, R., Soslow, L. P., Lewis, K. M., & Krantz, I. (2007). Parental narratives of genetic testing for hearing loss: audiologic implications for clinical work with children and families. American Journal of Audiology, 16, 57–67.CrossRefGoogle Scholar
  42. Stern, S. J., Arnos, K. S., Murrelle, L., Oelrich Welch, K., Nance, W. E., & Pandya, A. (2002). Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss. Journal of Medical Genetics, 39, 449–453.CrossRefGoogle Scholar
  43. Taneja, P. R., Pandya, A., Foley, D. L., Nicely, L. V., & Arnos, K. S. (2004). Attitudes of deaf individuals towards genetic testing. American Journal of Medical Genetics, 130A, 17–21.CrossRefGoogle Scholar
  44. Tervo, R. C., Azuma, S., Palmer, G., & Redinius, P. (2002). Medical students’ attitudes toward persons with disability: a comparative study. Archives of Physical and Medical Rehabilitation, 83, 1537–1542.CrossRefGoogle Scholar
  45. Tervo, R. C., Palmer, G., & Redinius, P. (2004). Health professional student attitudes towards people with disability. Clinical Rehabilitation, 18, 908–915.CrossRefGoogle Scholar
  46. Tversky, A., & Kahneman, D. (1981). The framing of decisions and the psychology of choice. Science, 211, 453–458.CrossRefGoogle Scholar
  47. Wagner, T. (1962). Licensing restrictions and the deaf driver. In S. G. Finesilver (Ed.), National symposium on the deaf driving and employability. Washington DC: US Department of Health, Education and Welfare.Google Scholar
  48. Weil, J., Ormond, K., Peters, J., Peters, K., Biesecker, B. B., & LeRoy, B. (2006). The relationship of nondirecteness to genetic counseling: report of a workshop at the 2003 NSGC annual education conference. Journal of Genetic Counseling, 15, 85–93.CrossRefGoogle Scholar
  49. Withrow, K. A., Burton, S., Arnos, K. S., Kalfoglou, A., & Pandya, A. (2008). Consumer motivations for pursuing genetic testing and their preferences for the provision of genetic services for hearing loss. Journal of Genetic Counseling, 17, 252–260.CrossRefGoogle Scholar
  50. Withrow, K. A., Tracy, K. A., Burton, S. K., Norris, V. W., Maes, H. H., Arnos, K. S., et al. (2009). Impact of genetic advances and testing for hearing loss: Results from a national consumer survey. American Journal of Medical Genetics Part A, 149A, 1159–1168.CrossRefGoogle Scholar
  51. Ysander, L. (1966). The safety of drivers with chronic disease. British Journal of Industrial Medicine, 23, 28–36.PubMedPubMedCentralGoogle Scholar

Copyright information

© The Author(s) 2009

Open AccessThis is an open access article distributed under the terms of the Creative Commons Attribution Noncommercial License (, which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.

Authors and Affiliations

  • Emily E. Enns
    • 1
  • Patrick Boudreault
    • 2
  • Christina G. S. Palmer
    • 3
    • 4
    • 5
    • 6
    Email author
  1. 1.Department of Biology Genetic Counseling Training ProgramCalifornia State University—NorthridgeNorthridgeUSA
  2. 2.Department of Deaf StudiesCalifornia State University—NorthridgeNorthridgeUSA
  3. 3.Department of Psychiatry & Biobehavioral SciencesUCLALos AngelesUSA
  4. 4.Department of Human GeneticsUCLALos AngelesUSA
  5. 5.Center for Society and GeneticsUCLALos AngelesUSA
  6. 6.UCLA Semel InstituteLos AngelesUSA

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