title: Is "incidental finding" the best term?: a study of patients' preferences.
abstract: There is debate within the genetics community about the optimal term to describe genetic variants unrelated to the test indication but potentially important for health. Given the lack of consensus and the importance of adopting terminology that promotes effective clinical communication, we sought the opinion of clinical genetics patients.
  
  
  
  Surveys and focus groups with two patient populations were conducted. Eighty-eight survey participants were asked to rank four terms according to how well each describes results unrelated to the test indication: incidental findings, secondary findings, additional findings, and ancillary findings. Participants in six focus groups were guided through a free-thought exercise to describe the desired attributes of such a term and then asked to formulate the best term to represent this concept.
  
  
  
  The term additional findings had the most first-choice rankings by survey participants, followed by secondary findings, incidental findings, and ancillary findings. Most focus group participants preferred the term additional findings; they also gave reasons why other terms were not optimal.
  
  
  
  Additional findings was preferred because it was more neutral and accessible than other terms currently in use. Patient perceptions and comprehension will be framed by the terminology used by healthcare providers. Thus, patient opinions should be considered by medical genetics professionals.Genet Med 19 2, 176-181.
authors.affiliation: Department of Medicine, University of Washington School of Medicine, Seattle, Washington, USA.
authors.forename: Nina
authors.identifier: 0000-0001-8513-016X
authors.initials: N
authors.lastname: Tan
authors.affiliation: Division of Medical Genetics, Department of Medicine, University of Washington, Seattle, Washington, USA.
authors.forename: Laura M
authors.identifier: 0000-0002-5506-6168
authors.initials: LM
authors.lastname: Amendola
authors.affiliation: Department of Genetics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
authors.forename: Julianne M
authors.identifier: 0000-0001-5843-4432
authors.initials: JM
authors.lastname: O'Daniel
authors.affiliation: Division of Medical Genetics, Department of Medicine, University of Washington, Seattle, Washington, USA.
authors.forename: Amber
authors.identifier: 0000-0003-1813-6726
authors.initials: A
authors.lastname: Burt
authors.affiliation: Division of Medical Genetics, Department of Medicine, University of Washington, Seattle, Washington, USA.
authors.forename: Martha J
authors.initials: MJ
authors.lastname: Horike-Pyne
authors.affiliation: Department of Genetics, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
authors.forename: Lacey
authors.identifier: 0000-0002-9848-7499
authors.initials: L
authors.lastname: Boshe
authors.affiliation: Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
authors.forename: Gail E
authors.identifier: 0000-0002-4968-7064
authors.initials: GE
authors.lastname: Henderson
authors.affiliation: Gillings School of Global Public Health & Department of Health Behavior University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
authors.forename: Christine
authors.identifier: 0000-0002-3169-3626
authors.initials: C
authors.lastname: Rini
authors.affiliation: Department of Genetics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.|Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
authors.forename: Myra I
authors.identifier: 0000-0001-9680-6006
authors.initials: MI
authors.lastname: Roche
authors.affiliation: Division of Medical Genetics, Department of Medicine, University of Washington, Seattle, Washington, USA.
authors.forename: Fuki M
authors.identifier: 0000-0001-7772-7855
authors.initials: FM
authors.lastname: Hisama
authors.affiliation: Department of Bioethics and Humanities, University of Washington, Seattle, Washington, USA.
authors.forename: Wylie
authors.identifier: 0000-0003-2914-0560
authors.initials: W
authors.lastname: Burke
authors.affiliation: Trueman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA.
authors.forename: Benjamin
authors.identifier: 0000-0002-2671-9860
authors.initials: B
authors.lastname: Wilfond
authors.affiliation: Division of Medical Genetics, Department of Medicine, University of Washington, Seattle, Washington, USA.|Department of Genome Sciences, University of Washington, Seattle, Washington, USA.
authors.forename: Gail P
authors.identifier: 0000-0002-6710-8708
authors.initials: GP
authors.lastname: Jarvik
mesh_terms: D000293:Adolescent; D000328:Adult; D001290:Attitude; D005260:Female; D015894:Genome, Human / Q000235:genetics*; D006801:Humans; D033162:Incidental Findings; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D017422:Sequence Analysis, DNA; D011795:Surveys and Questionnaires; D009626:Terminology as Topic