Journal article
Unselected Women's Experiences of Receiving Genetic Research Results for Hereditary Breast and Ovarian Cancer: A Qualitative Study
R Forbes Shepherd, LE Forrest, E Tutty, A Pearce, L Devereux, PA James, IG Campbell, A Trainer, MA Young
Genetic Testing and Molecular Biomarkers | Published : 2021
Abstract
Background: Although there is growing consensus that clinically actionable genetic research results should be returned to participants, research on recipients' experiences and best practices for return of research results is scarce. Objective: This study explored how women in a population-based study (lifepool) experience receiving research results about actionable pathogenic variants (PVs) for hereditary breast and ovarian cancer (HBOC) using a two-step notification process with telephone genetic counseling (TGC) support. Methods: We conducted qualitative interviews with lifepool participants with an HBOC PV. We used team-based codebook thematic analysis to develop findings. Findings: Thirt..
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Awarded by National Health and Medical Research Council