Genetic Counseling for Prenatal Testing: Where is the Discussion About Disability?
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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.
KeywordsDisability Prenatal screening Prenatal diagnosis Decision making Genetic counseling Genetic counselor
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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