title: Perceptions of genetic counseling services in direct-to-consumer personal genomic testing.
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.
authors.affiliation: Scripps Translational Science Institute, Scripps Genomic Medicine, Scripps Health, La Jolla, CA, USA.
authors.forename: B F
authors.initials: BF
authors.lastname: Darst
authors.forename: L
authors.initials: L
authors.lastname: Madlensky
authors.forename: N J
authors.initials: NJ
authors.lastname: Schork
authors.forename: E J
authors.initials: EJ
authors.lastname: Topol
authors.forename: C S
authors.initials: CS
authors.lastname: Bloss
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D005500:Follow-Up Studies; D005817:Genetic Counseling; D033142:Genetic Services; D005820:Genetic Testing; D023281:Genomics; D019538:Health Care Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D010465:Perception; D055815:Young Adult
keywords: direct-to-consumer; disclosure of genetic results; genetic counseling; genomic education; genomics; outcomes; personal genomic testing; personalized medicine; utilization