Genetic counseling for prenatal testing: where is the discussion about disability?
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.
Department of Genetics, Stanford University, Stanford, CA, USA.
Ellyn
E
Farrelly
Mildred K
MK
Cho
Lori
L
Erby
Debra
D
Roter
Anabel
A
Stenzel
Kelly
K
Ormond
D002658:Developmental Disabilities / Q000175:diagnosis* / Q000235:genetics; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D011296:Prenatal Diagnosis