Genetic counseling for prenatal testing: where is the discussion about disability?

J Genet Couns. 2012 Dec;21(6):814-24. doi: 10.1007/s10897-012-9484-z. Epub 2012 Aug 17.


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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Developmental Disabilities / diagnosis*
  • Developmental Disabilities / genetics
  • Female
  • Genetic Counseling*
  • Humans
  • Prenatal Diagnosis*