Community attitudes to the collection and use of identifiable data for health research – is it an invasion of privacy?
Article first published online: 2 AUG 2007
Australian and New Zealand Journal of Public Health
Volume 31, Issue 4, pages 313–317, August 2007
How to Cite
Molster, C., Bower, C. and O'Leary, P. (2007), Community attitudes to the collection and use of identifiable data for health research – is it an invasion of privacy?. Australian and New Zealand Journal of Public Health, 31: 313–317. doi: 10.1111/j.1753-6405.2007.00077.x
- Issue published online: 2 AUG 2007
- Article first published online: 2 AUG 2007
- Submitted: January 2007 Revision requested: April 2007 Accepted: May 2007
- Birth defects;
- data collection;
- research ethics;
- privacy of data;
- community survey
Objectives: 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.