BACKGROUND: Direct-to-consumer (DTC) personal genomic testing (PGT) allows individuals to learn about their genetic makeup without going through a physician, but some consumers share their results with their primary care provider (PCP). OBJECTIVE: To describe the characteristics and perceptions of DTC PGT consumers who discuss their results with their PCP. DESIGN: Longitudinal, prospective cohort study. SETTING: Online survey before and 6 months after results. PARTICIPANTS: DTC PGT consumers. MEASUREMENTS: Consumer satisfaction with the DTC PGT experience; whether and, if so, how many results could be used to improve health; how many results were not understood; and beliefs about the PCP's understanding of genetics. Participants were asked with whom they had discussed their results. Genetic reports were linked to survey responses. RESULTS: Among 1026 respondents, 63% planned to share their results with a PCP. At 6-month follow-up, 27% reported having done so, and 8% reported sharing with another health care provider only. Common reasons for not sharing results with a health care provider were that the results were not important enough (40%) or that the participant did not have time to do so (37%). Among participants who discussed results with their PCP, 35% were very satisfied with the encounter, and 18% were not at all satisfied. Frequently identified themes in participant descriptions of these encounters were actionability of the results or use in care (32%), PCP engagement or interest (25%), and lack of PCP engagement or interest (22%). LIMITATION: Participants may not be representative of all DTC PGT consumers. CONCLUSION: A comprehensive picture of DTC PGT consumers who shared their results with a health care provider is presented. The proportion that shares results is expected to increase with time after testing as consumers find opportunities for discussion at later appointments or if results become relevant as medical needs evolve. PRIMARY FUNDING SOURCE: National Institutes of Health.
BACKGROUND: Direct-to-consumer (DTC) personal genomic testing (PGT) allows individuals to learn about their genetic makeup without going through a physician, but some consumers share their results with their primary care provider (PCP). OBJECTIVE: To describe the characteristics and perceptions of DTC PGT consumers who discuss their results with their PCP. DESIGN: Longitudinal, prospective cohort study. SETTING: Online survey before and 6 months after results. PARTICIPANTS: DTC PGT consumers. MEASUREMENTS: Consumer satisfaction with the DTC PGT experience; whether and, if so, how many results could be used to improve health; how many results were not understood; and beliefs about the PCP's understanding of genetics. Participants were asked with whom they had discussed their results. Genetic reports were linked to survey responses. RESULTS: Among 1026 respondents, 63% planned to share their results with a PCP. At 6-month follow-up, 27% reported having done so, and 8% reported sharing with another health care provider only. Common reasons for not sharing results with a health care provider were that the results were not important enough (40%) or that the participant did not have time to do so (37%). Among participants who discussed results with their PCP, 35% were very satisfied with the encounter, and 18% were not at all satisfied. Frequently identified themes in participant descriptions of these encounters were actionability of the results or use in care (32%), PCP engagement or interest (25%), and lack of PCP engagement or interest (22%). LIMITATION: Participants may not be representative of all DTC PGT consumers. CONCLUSION: A comprehensive picture of DTC PGT consumers who shared their results with a health care provider is presented. The proportion that shares results is expected to increase with time after testing as consumers find opportunities for discussion at later appointments or if results become relevant as medical needs evolve. PRIMARY FUNDING SOURCE: National Institutes of Health.
Authors: Sarah E Gollust; Stacy W Gray; Deanna Alexis Carere; Barbara A Koenig; Lisa Soleymani Lehmann; Amy L McGUIRE; Richard R Sharp; Kayte Spector-Bagdady; N A Wang; Robert C Green; J Scott Roberts Journal: Milbank Q Date: 2017-06 Impact factor: 4.911
Authors: June C Carroll; Tutsirai Makuwaza; Donna P Manca; Nicolette Sopcak; Joanne A Permaul; Mary Ann O'Brien; Ruth Heisey; Elizabeth A Eisenhauer; Julie Easley; Monika K Krzyzanowska; Baukje Miedema; Sandhya Pruthi; Carol Sawka; Nancy Schneider; Jonathan Sussman; Robin Urquhart; Catarina Versaevel; Eva Grunfeld Journal: Can Fam Physician Date: 2016-10 Impact factor: 3.275
Authors: Josephine Johnston; John D Lantos; Aaron Goldenberg; Flavia Chen; Erik Parens; Barbara A Koenig Journal: Hastings Cent Rep Date: 2018-07 Impact factor: 2.683
Authors: K Sweet; A C Sturm; T Schmidlen; S Hovick; J Peng; K Manickam; A Salikhova; J McElroy; L Scheinfeldt; A E Toland; J S Roberts; M Christman Journal: Clin Genet Date: 2016-07-28 Impact factor: 4.438
Authors: Diane R Koeller; Wendy R Uhlmann; Deanna Alexis Carere; Robert C Green; J Scott Roberts Journal: J Genet Couns Date: 2017-05-16 Impact factor: 2.537