Deaf adults' reasons for genetic testing depend on cultural affiliation: Results from a prospective, longitudinal genetic counseling and testing study

Patrick Boudreault, Erin E. Baldwin, Michelle Fox, Loriel Dutton, Lee Elle Tullis, Joyce Linden, Yoko Kobayashi, Jin Zhou, Janet S. Sinsheimer, Yvonne Sininger, Wayne W. Grody, Christina G.S. Palmer

Research output: Contribution to journalArticle

24 Scopus citations

Abstract

This article examines the relationship between cultural affiliation and deaf adults' motivations for genetic testing for deafness in the first prospective, longitudinal study to examine the impact of genetic counseling and genetic testing on deaf adults and the deaf community. Participants (n = 256), classified as affiliating with hearing, Deaf, or both communities, rated interest in testing for 21 reasons covering 5 life domains. Findings suggest strong interest in testing to learn why they are deaf, but little interest in using it for decisions about a partner or having children. Culturally mediated variation was also demonstrated. Deaf and both communities groups viewed testing as useful for more life domains than the hearing community group. Deaf and both communities had similar motivations related to further exploration, understanding, or strengthening of deafness. Motivations related to "hearing" were also relevant for both communities. We conclude that cultural affiliation is an important factor for constructing motivations for genetic testing.

Original languageEnglish (US)
Pages (from-to)209-227
Number of pages19
JournalJournal of deaf studies and deaf education
Volume15
Issue number3
DOIs
StatePublished - May 20 2010

ASJC Scopus subject areas

  • Education
  • Speech and Hearing

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    Boudreault, P., Baldwin, E. E., Fox, M., Dutton, L., Tullis, L. E., Linden, J., Kobayashi, Y., Zhou, J., Sinsheimer, J. S., Sininger, Y., Grody, W. W., & Palmer, C. G. S. (2010). Deaf adults' reasons for genetic testing depend on cultural affiliation: Results from a prospective, longitudinal genetic counseling and testing study. Journal of deaf studies and deaf education, 15(3), 209-227. https://doi.org/10.1093/deafed/enq012