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Journal of Genetic Counseling

, Volume 21, Issue 2, pp 256–272 | Cite as

Effect of Pre-test Genetic Counseling for Deaf Adults on Knowledge of Genetic Testing

  • Erin E. Baldwin
  • Patrick Boudreault
  • Michelle Fox
  • Janet S. Sinsheimer
  • Christina G. S. PalmerEmail author
Original Research

Abstract

Empirical data on genetic counseling outcomes in the deaf population are needed to better serve this population. This study was an examination of genetics knowledge before and after culturally and linguistically appropriate pre-test genetic counseling in a diverse deaf adult sample. Individuals ≥18 years old with early-onset sensorineural deafness were offered connexin-26/30 testing and genetic counseling. Participants completed questionnaires containing 10 genetics knowledge items at baseline and following pre-test genetic counseling. The effects of genetic counseling, prior beliefs about etiology, and participant’s preferred language on genetics knowledge scores were assessed (n = 244). Pre-test genetic counseling (p = .0007), language (p < .0001), prior beliefs (p < .0001), and the interaction between counseling and beliefs (p = .035) were predictors of genetics knowledge. American Sign Language (ASL)-users and participants with “non-genetic/unknown” prior beliefs had lower knowledge scores than English-users and participants with “genetic” prior beliefs, respectively. Genetics knowledge improved after genetic counseling regardless of participants’ language; knowledge change was greater for the “non-genetic/unknown” beliefs group than the “genetic” beliefs group. ASL-users’ lower knowledge scores are consistent with evidence that ethnic and cultural minority groups have less genetics knowledge, perhaps from exposure and access disparities. Culturally and linguistically appropriate pre-test genetic counseling significantly improved deaf individuals’ genetics knowledge. Assessing deaf individuals’ prior beliefs is important for enhancing genetics knowledge.

Keywords

Genetic counseling Connexin-26 GJB2 Deaf Genetic testing American Sign Language Deafness Minority Genetics knowledge 

Notes

Acknowledgements

Thanks to the deaf and hard-of-hearing community of California who participated in this research. This work was supported by the National Human Genome Research Institute (Ethical, Legal, and Social Issues Branch) [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.

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Copyright information

© The Author(s) 2011

Open AccessThis is an open access article distributed under the terms of the Creative Commons Attribution Noncommercial License (https://doi.org/creativecommons.org/licenses/by-nc/2.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.

Authors and Affiliations

  • Erin E. Baldwin
    • 1
  • Patrick Boudreault
    • 2
  • Michelle Fox
    • 3
  • Janet S. Sinsheimer
    • 4
    • 5
    • 6
    • 7
  • Christina G. S. Palmer
    • 1
    • 4
    • 7
    Email author
  1. 1.Department of Psychiatry & Biobehavioral SciencesUCLALos AngelesUSA
  2. 2.Department of Deaf StudiesCSUNNorthridgeUSA
  3. 3.Department of PediatricsUCLALos AngelesUSA
  4. 4.Department of Human GeneticsUCLALos AngelesUSA
  5. 5.Department of BiostatisticsUCLALos AngelesUSA
  6. 6.Department of BiomathematicsUCLALos AngelesUSA
  7. 7.Center for Society and GeneticsUCLALos AngelesUSA

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