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

Ellyn Farrelly, Mildred K. Cho, Lori Erby, Debra Roter, Anabel Stenzel, Kelly Ormond

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)814-824
Number of pages11
JournalJournal of Genetic Counseling
Volume21
Issue number6
DOIs
StatePublished - Dec 1 2012

Keywords

  • Decision making
  • Disability
  • Genetic counseling
  • Genetic counselor
  • Prenatal diagnosis
  • Prenatal screening

ASJC Scopus subject areas

  • Genetics(clinical)

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