Volume 181 - Issue 3
Privacy: bad for your health?
Author: Gaston R B Arnolda
Med J Aust 2004; 181 (3): 173-174. || doi: 10.5694/j.1326-5377.2004.tb06217.x
Published online: 2 August 2004
Published online: 2 August 2004
Gaston R B Arnolda
Honorary Associate, Department of Public Health, University of Sydney, QEII Institute for Mothers and Babies, Building DO2, Sydney, NSW 2006. garnoldaATperinatal.usyd.edu.au
To the Editor: O’Grady and Noland, concerned about the consequences of privacy legislation,1 draw attention to “. . . the findings of an Australian survey in which 61% of adults believe that even their de-identified health information should not be used for research purposes without their consent”.
Unfortunately, they do not point out that the survey,2 commissioned by the Office of the Federal Privacy Commissioner, had a 20% response rate, making it effectively useless in determining what Australian adults really think about the use of their de-identified health information.
Alarmed at the possibility that “evidence” of this quality could be used to aid decision-making that had important implications for rigorous research, I turned to Google (<www.google.com>) for assistance. A Google search using the words “61% de-identified health information roy morgan” generated 21 hits, 15 of them unique, and only five related to the subject. One of the five was the letter by O’Grady and Noland, one was the report of the survey, and three specifically cited this survey result: Privacy Victoria,3 Privacy NSW,4 and the Office of the Federal Privacy Commissioner5 all used the result in formal submissions to reviews of privacy-related issues — without revealing the survey’s appalling response rate.
We have privacy commissioners who are powerful advocates of the principles of respect for privacy and autonomy. Perhaps the time has come for Australia to have “public interest commissioners” who can powerfully advocate for the public interest in high-quality health research.
References
- O’Grady K, Noland, F. Privacy: bad for your health? [letter]. Med J Aust 2004; 180: 307-308. <eMJA full text>
- Roy Morgan Research. Privacy and community, July 2001. Report prepared by the Federal Privacy Commission. Available at: privacy.gov.au/publications/rcommunity.html (accessed Mar 2004).
- Privacy Victoria, Office of the Victorian Privacy Commissioner. Submission to the Australian Law Reform Commission and Australian Health Ethics Committee Joint Inquiry into Protection of Human Genetic Information. December 2002. Available at: www.privacy.vic.gov.au/dir100/priweb.nsf/download/2D286014184B00BFCA256CBF001F3D37/$FILE/Genetics_web.pdf (accessed Mar 2004).
- Privacy NSW. Submission by Privacy NSW to the Australian Health Ministers Advisory Council National Health Privacy Working Group in relation to the Draft National Health Privacy Code. April 2003. Available at: http://www.lawlink.nsw.gov.au/pc.nsf/c8bb71d8e54ff40e4a2565e800280fa1/6440e88ac59e0b79ca256e2300205e15/$FILE/sub_healthcode2003.pdf (accessed Mar 2004).
- Office of the Federal Privacy Commissioner. Office of the Federal Privacy Commissioner submission to the HealthConnect Interim Research Report and the Draft Systems Architecture Report. January 2004. Available at: www.privacy.gov.au/publications/healthcsub04.pdf (accessed Mar 2004).