title: A preliminary investigation of genetic counselors' information needs when receiving a variant of uncertain significance result: a mixed methods study.
abstract: OBJECTIVE
  The aim of this study was to explore genetic counselors' information preferences on reports of variant of uncertain significance (VUS) results from cancer genetic testing.
  
  
  METHODS
  This mixed methods report (quantitative and qualitative approaches) utilized a survey of genetic counselors containing closed- and open-ended questions to explore genetic counselors' information needs and perceptions of the industry's current information sharing practices. Descriptive statistics were calculated for responses to the closed-ended questions, and thematic analysis guided the interpretation of the open-ended questions.
  
  
  RESULTS
  Of the 267 participants (28.6% response rate), the majority indicated a perceived lack of information on VUS laboratory reports, were concerned about the perceived practice of withholding information, and stated the information they wanted to see. Although most did not indicate how additional information would be used, some reported they would provide information directly to patients, and others reported that the information would be used to contextualize the VUS result when counseling patients.
  
  
  CONCLUSIONS
  This analysis identified information that genetic counselors believe is needed in VUS reports, indicating what they believe are best practices in lieu of guidelines for laboratories currently providing genetic testing services. Future studies should explore how genetic counselors use additional information contained in VUS reports.Genet Med 17 9, 739-746.
authors.affiliation: Health Outcomes and Behavior Program, H. Lee Moffitt Cancer Center, Tampa, Florida, USA.
authors.forename: Courtney L
authors.identifier: http://orcid.org/0000-0001-9362-5410
authors.initials: CL
authors.lastname: Scherr
authors.affiliation: Department of Health Sciences Research, Mayo Clinic, Scottsdale, Arizona, USA.
authors.forename: Noralane M
authors.initials: NM
authors.lastname: Lindor
authors.affiliation: Health Outcomes and Behavior Program, H. Lee Moffitt Cancer Center, Tampa, Florida, USA.
authors.forename: Teri L
authors.initials: TL
authors.lastname: Malo
authors.affiliation: Department of Laboratory Medicine and Pathology, Mayo Clinic, Rochester, Minnesota, USA.
authors.forename: Fergus J
authors.initials: FJ
authors.lastname: Couch
authors.affiliation: Health Outcomes and Behavior Program, H. Lee Moffitt Cancer Center, Tampa, Florida, USA.
authors.forename: Susan T
authors.initials: ST
authors.lastname: Vadaparampil
mesh_terms: D001291:Attitude of Health Personnel; D001943:Breast Neoplasms / Q000175:diagnosis / Q000235:genetics / Q000523:psychology; D005260:Female; D005817:Genetic Counseling / Q000379:methods* / Q000592:standards / Q000639:trends; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000379:methods* / Q000592:standards; D014644:Genetic Variation; D006801:Humans; D020380:Needs Assessment; D010051:Ovarian Neoplasms / Q000175:diagnosis / Q000235:genetics / Q000523:psychology; D010465:Perception; D011795:Surveys and Questionnaires; D035501:Uncertainty