title: Counselees' Perspectives of Genomic Counseling Following Online Receipt of Multiple Actionable Complex Disease and Pharmacogenomic Results: a Qualitative Research Study.
abstract: Genomic applications raise multiple challenges including the optimization of genomic counseling (GC) services as part of the results delivery process. More information on patients' motivations, preferences, and informational needs are essential to guide the development of new, more efficient practice delivery models that capitalize on the existing strengths of a limited genetic counseling workforce. Semi-structured telephone interviews were conducted with a subset of counselees from the Coriell Personalized Medicine Collaborative following online receipt of multiple personalized genomic test reports. Participants previously had either in-person GC (chronic disease cohort, n = 20; mean age 60 years) or telephone GC (community cohort, n = 31; mean age 46.8 years). Transcripts were analyzed using a Grounded Theory framework. Major themes that emerged from the interviews include 1) primary reasons for seeking GC were to clarify results, put results into perspective relative to other health-related concerns, and to receive personalized recommendations; 2) there is need for a more participant driven approach in terms of mode of GC communication (in-person, phone, video), and refining the counseling agenda pre-session; and 3) there was strong interest in the option of follow up GC. By clarifying counselees' expectations, views and desired outcomes, we have uncovered a need for a more participant-driven GC model when potentially actionable genomic results are received online.
authors.affiliation: Division of Human Genetics, Ohio State University Wexner Medical Center, 2012 Kenny Road, Columbus, OH, 43221, USA. Kevin.Sweet@osumc.edu.
authors.forename: Kevin
authors.identifier: http://orcid.org/0000-0002-9131-347X
authors.initials: K
authors.lastname: Sweet
authors.affiliation: School of Communication, Ohio State University, Columbus, OH, 43214, USA.
authors.forename: Shelly
authors.initials: S
authors.lastname: Hovick
authors.affiliation: Division of Human Genetics, Ohio State University Wexner Medical Center, 2012 Kenny Road, Columbus, OH, 43221, USA.|Dorothy M. Davis Heart and Lung Research Institute, Ohio State University Wexner Medical Center, Columbus, OH, 43420, USA.
authors.forename: Amy C
authors.initials: AC
authors.lastname: Sturm
authors.affiliation: Coriell Institute for Medical Research, 403 Haddon Avenue, Camden, NJ, 08103, USA.
authors.forename: Tara
authors.initials: T
authors.lastname: Schmidlen
authors.affiliation: 23andMe, Mountain View, CA, 94043, USA.
authors.forename: Erynn
authors.initials: E
authors.lastname: Gordon
authors.affiliation: Division of Translational Medicine and Human Genetics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, 19104, USA.
authors.forename: Barbara
authors.initials: B
authors.lastname: Bernhardt
authors.affiliation: Coriell Institute for Medical Research, 403 Haddon Avenue, Camden, NJ, 08103, USA.
authors.forename: Lisa
authors.initials: L
authors.lastname: Wawak
authors.affiliation: Division of Human Genetics, Ohio State University Wexner Medical Center, 2012 Kenny Road, Columbus, OH, 43221, USA.
authors.forename: Karen
authors.initials: K
authors.lastname: Wernke
authors.affiliation: Department of Biomedical Informatics, Center for Biostatistics, Columbus, OH, 43221, USA.
authors.forename: Joseph
authors.initials: J
authors.lastname: McElroy
authors.affiliation: Coriell Institute for Medical Research, 403 Haddon Avenue, Camden, NJ, 08103, USA.|Temple University, SERC Building 1925 N. 12th St, Philadelphia, PA, 19122-1801, USA.
authors.forename: Laura
authors.initials: L
authors.lastname: Scheinfeldt
authors.affiliation: Division of Human Genetics, Ohio State University Wexner Medical Center, 2012 Kenny Road, Columbus, OH, 43221, USA.
authors.forename: Amanda E
authors.initials: AE
authors.lastname: Toland
authors.affiliation: Department of Health Behavior & Health Education, University of Michigan School of Public Health, Ann Arbor, MI, USA.
authors.forename: J S
authors.initials: JS
authors.lastname: Roberts
authors.affiliation: Coriell Institute for Medical Research, 403 Haddon Avenue, Camden, NJ, 08103, USA.
authors.forename: Michael
authors.initials: M
authors.lastname: Christman
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D017060:Patient Satisfaction; D010597:Pharmacogenetics; D057285:Precision Medicine; D011369:Professional-Patient Relations; D036301:Qualitative Research
keywords: Complex disease; Counseling; Genetic; Genomic; Practice models; Qualitative interviews; Service delivery