title: Community attitudes to the collection and use of identifiable data for health research--is it an invasion of privacy?
abstract: OBJECTIVE
  To investigate community views on the statutory collection of identifiable data by the Western Australian Birth Defects Registry and the extent to which the use of such data is perceived to be an invasion of privacy, when balanced against the community benefit of three public health scenarios.
  
  
  METHODS
  Cross-sectional, computer-assisted telephone interviewing survey. Six hundred respondents were recruited randomly from the electronic version of the Western Australian telephone directory.
  
  
  RESULTS
  Interviews were conducted in August 2006 and the response rate was 78%. Most respondents indicated support for statutory notification of cases (79%) and did not consider the statutory notification of postcodes (85%) and names and addresses (65%) to be an invasion of privacy. Similarly, most (76%) did not consider the receipt of a letter requesting participation in research to be an invasion of privacy. Overall, 55% considered none of these to be an invasion of privacy and only 4% considered all to be an invasion of privacy.
  
  
  CONCLUSIONS
  Most Western Australians do not consider the statutory inclusion and use of identifiable data by the WA Birth Defects Registry to be an invasion of privacy, to the extent that such data are required for legitimate public health research, would be notified by the registrant's medical practitioner and would be kept confidentially and securely.
authors.affiliation: Office of Population Health Genomics, Health Policy and Clinical Reform Division, Department of Health, Western Australia.
authors.forename: Caron
authors.initials: C
authors.lastname: Molster
authors.forename: Carol
authors.initials: C
authors.lastname: Bower
authors.forename: Peter
authors.initials: P
authors.lastname: O'Leary
mesh_terms: D001290:Attitude; D035843:Biomedical Research; D003430:Cross-Sectional Studies; D006801:Humans; D007407:Interviews as Topic; D018907:Privacy; D014904:Western Australia