title: A focus group study of consumer attitudes toward genetic testing and newborn screening for deafness.
abstract: OBJECTIVE
  Progress in identifying genes for deafness together with implementation of universal audiologic screening of newborns has provided the opportunity for more widespread use of molecular tests to detect genetic forms of hearing loss. Efforts to assess consumer attitudes toward these advances have lagged behind.
  
  
  METHODS
  Consumer focus groups were held to explore attitudes toward genetic advances and technologies for hearing loss, views about newborn hearing screening, and reactions to the idea of adding molecular screening for hearing loss at birth. Focus group discussions were recorded, transcribed and analyzed.
  
  
  RESULTS
  Five focus groups with 44 participants including hearing parents of deaf children, deaf parents and young deaf adults were held. Focus group participants supported the use of genetic tests to identify the etiology of hearing loss but were concerned that genetic information might influence reproductive decisions. Molecular newborn screening was advocated by some; however, others expressed concern about its effectiveness.
  
  
  CONCLUSIONS
  Documenting the attitudes of parents and other consumers toward genetic technologies establishes the framework for discussions on the appropriateness of molecular newborn screening for hearing loss and informs specialists about potential areas of public education necessary prior to the implementation of such screening.
authors.affiliation: Genetics Program, Department of Biology, Gallaudet University, Washington, DC, USA.
authors.forename: Sarah K
authors.initials: SK
authors.lastname: Burton
authors.forename: Kara
authors.initials: K
authors.lastname: Withrow
authors.forename: Kathleen S
authors.initials: KS
authors.lastname: Arnos
authors.forename: Andrea L
authors.initials: AL
authors.lastname: Kalfoglou
authors.forename: Arti
authors.initials: A
authors.lastname: Pandya
mesh_terms: D000293:Adolescent; D000328:Adult; D001290:Attitude; D003638:Deafness / Q000175:diagnosis* / Q000235:genetics*; D005260:Female; D017144:Focus Groups; D005820:Genetic Testing / Q000523:psychology*; D006320:Hearing Tests / Q000523:psychology; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D015997:Neonatal Screening / Q000523:psychology*; D010465:Perception