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Journal of Genetic Counseling

, Volume 21, Issue 6, pp 814–824 | Cite as

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

  • Ellyn Farrelly
  • Mildred K. Cho
  • Lori Erby
  • Debra Roter
  • Anabel Stenzel
  • Kelly Ormond
Original Research

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.

Keywords

Disability Prenatal screening Prenatal diagnosis Decision making Genetic counseling Genetic counselor 

Notes

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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Copyright information

© National Society of Genetic Counselors, Inc. 2012

Authors and Affiliations

  • Ellyn Farrelly
    • 1
    • 2
  • Mildred K. Cho
    • 2
  • Lori Erby
    • 3
  • Debra Roter
    • 3
  • Anabel Stenzel
    • 4
  • Kelly Ormond
    • 1
    • 2
    • 5
  1. 1.Department of GeneticsStanford UniversityStanfordUSA
  2. 2.Center for Biomedical EthicsStanford UniversityStanfordUSA
  3. 3.Department of Health, Behavior, and SocietyJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  4. 4.Lucile Packard Children’s HospitalStanfordUSA
  5. 5.StanfordUSA

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