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Date of Award

5-2017

Document Type

Thesis - Campus Access Only

Degree Name

MS Human Genetics

Department

Human Genetics Graduate Program

Abstract

482 genetic counselors were surveyed regarding their attitudes toward, and experiences with, Direct-to-Consumer genetic testing (DTC-GT). 56.4% of respondents (n=263) felt negatively or very negatively toward DTC-GT, 36.7% felt neutral (n=171), and 6.9% felt positively or very positively (n=32). While 90.9% of respondents (n=398) believe that DTC-GT testing would be improved with the expertise of genetic counselors, only 31.2% indicate that they are comfortable providing counseling to DTC-GT consumers (n=142). 40.1% of counselors (n=189) have seen at least one patient in clinic for the purpose of reviewing DTC-GT results. Of these, 91.6% (n=239) felt the encounter was beneficial to the consumer. In general, more years in genetic counseling practice correlates with a more positive view of DTC-GT (p<0.01), and non-clinical genetic counselors are more accepting of DTC-GT than their clinical counterparts (p<0.01). In addition to the survey, 17 interviews were conducted to get more detailed perspectives, specially on who genetic counselors believe are most suited to providing genetic counseling for DTC-GT services. From the interviews, 6/17 said that genetic counseling should be provided by the DTCGT company, 4/17 said it should be provided by independent genetic counselors, 2/17 said both should be involved, and 5/17 were undecided.

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