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Genetic Counseling for Prenatal Testing: Where is the Discussion About Disability?

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

There are little data revealing how genetic counselors talk about disability in the prenatal setting. We performed a qualitative analysis of 93 existing transcripts from simulated patient (SP) genetic counseling sessions conducted in 2003–4 through the Genetic Counseling Video Project. We found that most genetic counselors (95%) focused on the physical aspects of disability while fewer (27%) discussed the social aspects. In addition, few genetic counselors (38%) asked patients about personal experiences with disability. When discussing options available if a pregnancy were diagnosed with a disability, most genetic counselors mentioned termination (86%) while fewer mentioned the continuation of the pregnancy (37%) or adoption (13%). Only half of the genetic counselors asked the SP if she had thought about how she might use the results of prenatal screening. To better facilitate informed decision-making that is consistent with patient values, we recommend genetic counselors engage prenatal patients in a deeper discussion about their ability and willingness to parent a child with a disability.

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Acknowledgements

The original Genetic Counseling Video Project (GCVP) was supported by grant 1R01HG002688-01A1, Genetic Counseling Processes and Analogue Client Outcomes, funded by the National Human Genome Research Institute of the NIH. The current project was supported in part by NIH grant # P50 HG003389 through the Stanford Center for Biomedical Ethics. This project was completed in partial fulfillment of the first author’s master degree.

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Authors and Affiliations

  1. Department of Genetics, Stanford University, Stanford, CA, USA

    Ellyn Farrelly & Kelly Ormond

  2. Center for Biomedical Ethics, Stanford University, Stanford, CA, USA

    Ellyn Farrelly, Mildred K. Cho & Kelly Ormond

  3. Department of Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Lori Erby & Debra Roter

  4. Lucile Packard Children’s Hospital, Stanford, CA, USA

    Anabel Stenzel

  5. 300 Pasteur Drive, M/C 5208, Stanford, CA, 94305-5208, USA

    Kelly Ormond

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  1. Ellyn Farrelly
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  2. Mildred K. Cho
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  3. Lori Erby
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  4. Debra Roter
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  5. Anabel Stenzel
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  6. Kelly Ormond
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Correspondence to Kelly Ormond.

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Farrelly, E., Cho, M.K., Erby, L. et al. Genetic Counseling for Prenatal Testing: Where is the Discussion About Disability?. J Genet Counsel 21, 814–824 (2012). https://doi.org/10.1007/s10897-012-9484-z

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  • DOI: https://doi.org/10.1007/s10897-012-9484-z

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