ArticleJournal of community genetics2026
In their own words: a qualitative exploration of patients' perspectives of genetic counseling sessions across clinical disciplines.
Article in Journal of community genetics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Authors and funding
7 authors.
Funding
Abstract
Genetic counselors (GCs) help individuals navigate living with genetic conditions via models of practice that emphasize GC-defined processes and outcomes. While quantitative, patient-reported measures have assessed patients' experiences and outcomes, there are limited qualitative studies that explore patient-reported impressions of genetic counseling in their own voice. A subset of genetic counseling patients enrolled in the Genetic Counseling Processes Result in Outcomes (GC-PRO) study completed a semi-structured phone or video interview within 1-2 weeks of their genetic counseling session. Transcripts (n = 25) were purposefully sampled from different clinic locations (three institutions), specialties (prenatal, cancer, cardiology, general genetics), participant responses to quantitative surveys, and demographics. A constructivist approach via reflexive thematic analysis identified five themes about the patient experience with GC behaviors and outcomes: (1) Follow my lead; (2) Working collaboratively over time; (3) We value information; (4) GC expertise and caring demeanor are unique; and (5) I left with takeaways. Patients identified the importance of GC behaviors that fostered a patient-led, collaborative session where informational and supportive needs were met in a tailored manner. Clear information-giving from a knowledgeable GC was consistently perceived to be valuable. Participants typically did not enter a session with a predetermined outcome, yet they later identified emotional impacts, gaining new perspectives about genetic information, and feeling empowered by actionable recommendations as outcomes. This research adds to the literature on patient-defined outcomes and perspectives on counseling processes which at times differ from classical provider definitions and serves to support additions to the current models of practice.
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