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Perceptions of genetic counseling services in direct-to-consumer personal genomic testing

Authors

  • BF Darst,

    1. Scripps Translational Science Institute, Scripps Genomic Medicine, Scripps Health, La Jolla, CA, USA
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  • L Madlensky,

    1. Moores Cancer Center, University of California, San Diego, San Diego, CA, USA
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  • NJ Schork,

    1. Scripps Translational Science Institute, Scripps Genomic Medicine, Scripps Health, La Jolla, CA, USA
    2. Department of Molecular and Experimental Medicine, The Scripps Research Institute, La Jolla, CA, USA
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  • EJ Topol,

    1. Scripps Translational Science Institute, Scripps Genomic Medicine, Scripps Health, La Jolla, CA, USA
    2. Department of Molecular and Experimental Medicine, The Scripps Research Institute, La Jolla, CA, USA
    3. Scripps Clinic Medical Group, Division of Cardiology, La Jolla, CA, USA
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  • CS Bloss

    Corresponding author
    1. Scripps Translational Science Institute, Scripps Genomic Medicine, Scripps Health, La Jolla, CA, USA
    • Corresponding author: Cinnamon S. Bloss, PhD, 3344 North Torrey Pines Court, Suite 300, La Jolla, CA 92037, USA.

      Tel.: +858 554 5737;

      fax: +858 546 9280;

      e-mail: cbloss@scripps.edu

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  • The authors have no conflicts of interest to declare.

Abstract

To describe consumers' perceptions of genetic counseling services in the context of direct-to-consumer personal genomic testing is the purpose of this research. Utilizing data from the Scripps Genomic Health Initiative, we assessed direct-to-consumer genomic test consumers' utilization and perceptions of genetic counseling services. At long-term follow-up, approximately 14 months post-testing, participants were asked to respond to several items gauging their interactions, if any, with a Navigenics genetic counselor, and their perceptions of those interactions. Out of 1325 individuals who completed long-term follow-up, 187 (14.1%) indicated that they had spoken with a genetic counselor. The most commonly given reason for not utilizing the counseling service was a lack of need due to the perception of already understanding one's results (55.6%). The most common reasons for utilizing the service included wanting to take advantage of a free service (43.9%) and wanting more information on risk calculations (42.2%). Among those who utilized the service, a large fraction reported that counseling improved their understanding of their results (54.5%) and genetics in general (43.9%). A relatively small proportion of participants utilized genetic counseling after direct-to-consumer personal genomic testing. Among those individuals who did utilize the service, however, a large fraction perceived it to be informative, and thus presumably beneficial.

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