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. © 2012 National Society of Genetic Counselors, Inc.
CITATION STYLE
Farrelly, E., Cho, M. K., Erby, L., Roter, D., Stenzel, A., & Ormond, K. (2012). Genetic counseling for prenatal testing: Where is the discussion about disability? Journal of Genetic Counseling, 21(6), 814–824. https://doi.org/10.1007/s10897-012-9484-z
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