Volume 194 - Issue 12
Doctors breaching patient privacy: Orwell redux
Authors: Graeme K Suthers, Elizabeth A McCusker and Samantha A Wake
Med J Aust 2011; 194 (12): 670-671. || doi: 10.5694/j.1326-5377.2011.tb03169.x
Published online: 20 June 2011
Published online: 20 June 2011
To the Editor: Handelsman and colleagues raise concerns1 about medical confidentiality with regard to legislation in New South Wales and a recent National Health and Medical Research Council (NHMRC) guideline. We wish to correct some of their statements related to the NHMRC guideline.
The NHMRC recently released two documents about the use of genetic testing and genetic information in health care. The first describes the mandatory process by which clinicians can utilise new provisions in federal privacy legislation.2 This guideline was the subject of our editorial3 in the same issue of the Journal as Handelsman et al’s Viewpoint article. The second document is an information paper on medical genetic testing, including reference to disclosure of information, and directs readers to relevant resources.4 Handelsman et al cited the second document, but their concerns pertain to the first.
Disclosure of genetic information without consent for the benefit of relatives was considered by the Australian Law Reform Commission (ALRC) in 2001–2003. The Commission consulted widely in preparing its two-volume report on genetics and ethics.5 The Commission recommended amending the Privacy Act 1988 (Cwlth) to allow disclosure in certain circumstances. It is incorrect to suggest that the proposal had the potential to “silently harm individuals who do not form sufficiently clamorous rights-demanding groups”.1
The federal government responded by amending the Privacy Act, and the NHMRC was charged with drafting a mandatory guideline2 for clinicians using the amendment. We were members of the working committee who, together with the NHMRC and the Office of the Australian Information Commissioner, ensured the guideline complied generally with federal privacy legislation and reflected the intent of the ALRC. The guideline was subject to public and targeted consultation — it does not represent an arbitrary standard, as suggested by Handelsman et al.1
The guideline emphasises the importance of confidentiality and the need to balance the rights of patients and genetic relatives. It carefully defines what information can be used or disclosed, and to whom. In contrast to Handelsman et al’s assertion, the legislation does not allow disclosure of a patient’s identity or genetic status. Disclosure is only permitted after extensive, documented consultation. It is incorrect to suggest that disclosure occurs at the “sole discretion” of a doctor or is the “lazy path”.
Disclosure without consent represents a major change in the use of medical information, and best practice involves communicating with patients to avoid the very situation that the legislation and guideline address. But we must also recognise that, for each of us, our genetic heritage — and the right to access that heritage — is something that we share with our relatives.
Competing interests
All authors were on the NHMRC committee that drafted the guidelines.2
References
- Handelsman DJ, Turner LA, Conway AJ. Doctors breaching patient privacy: Orwell redux. Med J Aust 2011; 194: 403-404. 0_CBBHCHIB
- National Health and Medical Research Council and Office of the Privacy Commissioner. Use and disclosure of genetic information to a patient’s genetic relatives under section 95AA of the Privacy Act 1988 (Cth). Guidelines for health practitioners in the private sector. Canberra: Commonwealth of Australia, 2009. http://www.nhmrc.gov.au/_files_nhmrc/file/publications/synopses/e96.pdf (accessed May 2011).
- Suthers GK, McCusker EA, Wake SA. Alerting genetic relatives to a risk of serious inherited disease without a patient’s consent. Med J Aust 2011; 194: 385-386. 0_pgfId-2351295
- National Health and Medical Research Council. Medical genetic testing: information for health professionals. Canberra: NHMRC, 2010. http://www.nhmrc.gov.au/publications/synopses/e99syn.htm (accessed May 2011).
- Australian Law Reform Commission and Australian Health Ethics Committee. Essentially yours: the protection of human genetic information in Australia. Sydney: ALRC, 2003. (Report No. 96.) www.austlii.edu.au/au/other/alrc/publications/reports/96/index.html (accessed May 2011).