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Medical registry governance and patient privacy

Owen D Williamson, Peter A Cameron and John J McNeil
Med J Aust 2004; 181 (3): . || doi: 10.5694/j.1326-5377.2004.tb06200.x
Published online: 2 August 2004

A more efficient system of governance is needed to safeguard individual privacy while allowing registries to operate for the public good


  • Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC.


Correspondence: 

  • 1. Illman J. Cancer registries: should informed consent be required? J Natl Cancer Inst 2002; 94: 1269-1270.
  • 2. Dudek J. Informed consent for cancer registration. Lancet Oncol 2001; 2: 8-9.
  • 3. Ingelfinger JR, Drazen JM. Registry research and medical privacy. N Engl J Med 2004; 350: 1452-1453.
  • 4. Tu JV, Willison DJ, Silver FL, et al. Impracticability of informed consent in the registry of the Canadian Stroke Network. N Engl J Med 2004; 350: 1412-1421.
  • 5. O’Grady K-AF, Nolan TM. Privacy: bad for your health? [letter]. Med J Aust 2004; 180: 307. <MJA full text>
  • 6. Chadwick P, Wilson B. Privacy: bad for your health? [letter]. Med J Aust 2004; 180: 307-308. <MJA full text>
  • 7. Graves SE, Davidson D, Ingerson L, et al. The Australian Orthopaedic Association National Joint Replacement Registry. Med J Aust 2004; 180 (5 Suppl): S31-S34. <MJA full text>
  • 8. Cameron PA, Finch CF, Gabbe BJ, et al. Developing Australia’s first statewide trauma registry — what are the lessons? ANZ J Surg 2004; 74: 424-428.
  • 9. Roberts LM, Bowyer L, Horner CS, Brown MA. Multicentre research: negotiating the ethics approval obstacle course [letter]. Med J Aust 2004; 180: 139. <MJA full text>
  • 10. National Health and Medical Research Council. Guidelines for genetic registers and associated genetic material. Canberra: NHMRC, 1999: 11-12. Available at: www.nhmrc.gov.au/publications/pdf/e14.pdf (accessed May 2004).
  • 11. National Health and Medical Research Council. Guidelines approved under Section 95A of the Privacy Act 1988. Canberra: NHMRC, 2001: 35-46. Available at: www.health.gov.au/nhmrc/publications/pdf/e43.pdf (accessed May 2004).

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