title: Public attitudes about genetic testing in the newborn period.
abstract: OBJECTIVE
  To measure attitudes toward newborn genetic testing in our jurisdiction.
  
  
  METHODS
  A cross-sectional, pen-and-paper survey.
  
  
  METHODS
  The survey was administered to the general public and prospective parents in Eastern Canada between April 2010 and December 2010.
  
  
  METHODS
  A total of 648 individuals completed surveys.
  
  
  RESULTS
  Positive attitudes were found toward newborn genetic testing, regardless of whether an effective treatment existed for the disorder in question or whether the disorder developed in adulthood. A majority agreed (69%) that testing should be available for any condition to assist with future reproductive decisions. Most respondents (93%) agreed parents should provide informed consent before newborn screening (NBS) was undertaken and that parents had a fundamental right to access NBS if they so choose.
  
  
  CONCLUSIONS
  Interest in NBS for genetic disorders is generally high, regardless of whether an effective treatment exists. Findings lend support to the expansion of NBS panels to include those disorders currently lacking treatment but highlight consumers' desire for informed consent before testing is undertaken.
authors: Department of Clinical Epidemiology, Faculty of Medicine, Eastern Health and Memorial University, St. John's, NL, Canada.. Electronic address: holly.etchegary@med.mun.ca.
authors: Holly
authors: H
authors: Etchegary
authors: Department of Clinical Epidemiology, Faculty of Medicine, Eastern Health, St. John's, NL, Canada.
authors: Elizabeth
authors: E
authors: Dicks
authors: Department of Clinical Epidemiology, Faculty of Medicine, Memorial University, St. John's, NL, Canada.
authors: Kathleen
authors: K
authors: Hodgkinson
authors: Department of Genetics, Faculty of Medicine, Memorial University, St. John's, NL, Canada.
authors: Daryl
authors: D
authors: Pullman
authors: Department of Genetics, Faculty of Medicine, Memorial University, St. John's, NL, Canada.
authors: Jane
authors: J
authors: Green
authors: Department of Clinical Epidemiology, Faculty of Medicine, Memorial University, St. John's, NL, Canada.
authors: Patrick
authors: P
authors: Parfey
mesh_terms: D000328:Adult; D000367:Age Factors; D001294:Attitude to Health; D002170:Canada; D003430:Cross-Sectional Studies; D005260:Female; D005820:Genetic Testing / Q000379:methods / Q000706:statistics & numerical data*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D015997:Neonatal Screening / Q000592:standards / Q000639:trends; D033282:Parental Consent / Q000523:psychology / Q000706:statistics & numerical data*; D011639:Public Opinion; D018570:Risk Assessment; D012737:Sex Factors; D013315:Stress, Psychological; D011795:Surveys and Questionnaires