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Genomic Counseling in the Newborn Period: Experiences and Views of Genetic Counselors |
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| Authors: | Monica D Nardini Anne L Matthews Shawn E McCandless Larisa Baumanis Aaron J Goldenberg |
| Institution: | 1. Genomic Medicine Institute, Cleveland Clinic, Cleveland, OH, USA 2. Department of Genetics and Genome Sciences, Case Western Reserve University, Cleveland, OH, USA 3. Department of Genetics and Genome Sciences, Case Western Reserve University and Center for Human Genetics, Case Western Reserve University, Cleveland, OH, USA 4. Department of Genetics and Genome Sciences, Case Western Reserve University and Center for Human Genetics, University Hospitals Case Medical Center, Cleveland, OH, USA 5. Department of Bioethics and Center for Genetic Research Ethics and Law, School of Medicine, TA-212, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH, 44106-4976, USA |
| Abstract: | As newborn screening (NBS) technology expands, genetic counselors will become more involved in counseling for NBS results, including those potentially generated from whole exome sequencing (WES) and eventually whole genome sequencing (WGS). Members of the National Society of Genetic Counselors (NSGC) responded to an online survey (n?=?208) regarding genomic counseling in the context of NBS. The majority of participants (82.1 %) did not feel prepared to counsel for WGS results from NBS. Counselors with previous WES/WGS counseling experience felt more prepared (p?=?0.005) to counsel for WGS results from NBS than those without WES/WGS experience. Overall, counselors expressed ethical and practical concerns regarding WGS in NBS, as well as a need for additional training regarding this application of the technology before it is implemented. Based on the results of this study, genetic counselors voice caution to the larger genetics community regarding expansion of NBS to incorporate genomic sequencing and advocate for additional education prior to initiating WGS into NBS. |
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