title: Patient preferences regarding incidental genomic findings discovered during tumor profiling.
abstract: BACKGROUND
  During the process of tumor profiling, there is the potential to detect germline variants. To the authors' knowledge, there currently is no accepted standard of care for how to deal with these incidental findings. The goal of the current study was to assess disclosure preferences among patients with cancer regarding incidental genomic variants that may be discovered during tumor profiling.
  
  
  METHODS
  A 45-item questionnaire was administered to 413 patients in ambulatory oncology clinics. The survey captured demographic and disease variables and personal and family history, and presented case scenarios for different types of incidental germline variants that could theoretically be detected during genomic analysis of a patient's tumor.
  
  
  RESULTS
  The possibility of discovering non-cancer-related, germline variants did not deter patients from tumor profiling: 77% wanted to be informed concerning variants that could increase their risk of a serious but preventable illness, 56% wanted to know about variants that cause a serious but unpreventable illness, and 49% wanted to know about variants of uncertain significance. The majority of patients (75%) indicated they would share hereditary information regarding predisposition to preventable diseases with family and 62% would share information concerning unpreventable diseases. The most frequent concerns about incidental findings were ability to obtain health (48%) or life (41%) insurance. Only 21% of patients were concerned about privacy of information.
  
  
  CONCLUSIONS
  Patients with cancer appear to prefer to receive information regarding incidental germline variants, but there is substantial variability with regard to what information patients wish to learn. The authors recommend that personal preferences for the disclosure of different types of incidental findings be clarified before a tumor profiling test is ordered. Cancer 2016;122:1588-97. © 2016 American Cancer Society.
authors.affiliation: Department of Hematology and Medical Oncology, Emory University School of Medicine, Atlanta, Georgia.
authors.forename: Melinda L
authors.initials: ML
authors.lastname: Yushak
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Gang
authors.initials: G
authors.lastname: Han
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Sara
authors.initials: S
authors.lastname: Bouberhan
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Lianne
authors.initials: L
authors.lastname: Epstein
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Michael P
authors.initials: MP
authors.lastname: DiGiovanna
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Sarah S
authors.initials: SS
authors.lastname: Mougalian
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Tara B
authors.initials: TB
authors.lastname: Sanft
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Maysa M
authors.initials: MM
authors.lastname: Abu-Khalaf
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Gina G
authors.initials: GG
authors.lastname: Chung
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Stacey M
authors.initials: SM
authors.lastname: Stein
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Sarah B
authors.initials: SB
authors.lastname: Goldberg
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Lajos
authors.initials: L
authors.lastname: Pusztai
authors.affiliation: Section of Medical Oncology, Yale Cancer Center, Yale School of Medicine, New Haven, Connecticut.
authors.forename: Erin W
authors.initials: EW
authors.lastname: Hofstatter
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D030881:Disclosure; D018095:Germ-Line Mutation; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000235:genetics* / Q000473:pathology / Q000523:psychology*; D057240:Patient Preference / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: disclosure; genome; genomics; germline mutation; incidental findings; questionnaire