title: Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age.
abstract: While experts have made recommendations, information is needed regarding what genome sequencing results patients would want returned. We investigated what results women diagnosed with breast cancer at a young age would want returned and why. We conducted 60 semi-structured, in-person individual interviews with women diagnosed with breast cancer at age 40 or younger. We examined interest in six types of incidental findings and reasons for interest or disinterest in each type. Two coders independently coded interview transcripts; analysis was conducted using NVivo 10. Most participants were at least somewhat interested in all six result types, but strongest interest was in actionable results (i.e. variants affecting risk of a preventable or treatable disease and treatment response). Reasons for interest varied between different result types. Some participants were not interested or ambivalent about results not seen as currently actionable. Participants wanted to be able to choose what results are returned. Participants distinguished between types of individual genome sequencing results, with different reasons for wanting different types of information. The findings suggest that a focus on actionable results can be a common ground for all stakeholders in developing a policy for returning individual genome sequencing results.
authors: Department of Communication, University of Utah, Salt Lake City, UT, USA.|Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA.
authors: K A
authors: KA
authors: Kaphingst
authors: Division of Public Health Sciences, Washington University School of Medicine, St. Louis, MO, USA.
authors: J
authors: J
authors: Ivanovich
authors: Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, MD, USA.
authors: B B
authors: BB
authors: Biesecker
authors: School of Law, Washington University, St. Louis, MO, USA.
authors: R
authors: R
authors: Dresser
authors: Division of Public Health Sciences, Washington University School of Medicine, St. Louis, MO, USA.
authors: J
authors: J
authors: Seo
authors: Mission HealthCare, Asheville, NC, USA.
authors: L G
authors: LG
authors: Dressler
authors: College of Medicine, Ohio State University, Columbus, OH, USA.
authors: P J
authors: PJ
authors: Goodfellow
authors: Division of Public Health Sciences, Washington University School of Medicine, St. Louis, MO, USA.
authors: M S
authors: MS
authors: Goodman
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000175:diagnosis* / Q000235:genetics / Q000523:psychology; D005260:Female; D005820:Genetic Testing; D015894:Genome, Human; D006801:Humans; D033162:Incidental Findings; D008875:Middle Aged; D017422:Sequence Analysis, DNA; D011795:Surveys and Questionnaires
keywords: breast cancer; genome sequencing; incidental findings; patient preferences; return of results