Doctors breaching patient privacy: Orwell redux

To the Editor: I write to clarify the National Health and Medical Research Council’s (NHMRC’s) role in supporting the dissemination of the Privacy Act 1988 (Cwlth), which regulates information privacy, and to correct some statements made by Handelsman and colleagues in their Viewpoint article.1

The process of using or disclosing genetic information to a patient’s genetic relatives in circumstances where patient consent is not given is complex.

In 2006, the Privacy Act was amended to enable a health service provider to disclose the genetic information of a patient (and not specific information about an individual) to their genetic relatives. This may be done in certain circumstances and in accordance with guidelines2 developed by the NHMRC to assist health practitioners faced with the difficulty of making decisions about use or disclosure.

The guidelines, approved by the Privacy Commissioner and then released in December 2009, establish when, by whom and in what manner the use or disclosure of genetic information may take place, with particular reference to the statutory test set out in the National Privacy Principles. That test provides for use and disclosure when there is:

• a serious threat to the life, health or safety of a genetic relative; and

• the use or disclosure is necessary to lessen or prevent that threat.

The NHMRC agrees that such situations are likely to occur rarely, as patients in the great majority of cases agree to communicate their genetic information to relatives, particularly if there is potential for that information to benefit their relatives’ health.

Furthermore, the amendments do not oblige use or disclosure. Rather, they provide the framework for this to occur in certain circumstances.

Handelsman et al’s criticism of the guidelines and interpretation that “disavowal of patient confidentiality [is] at a doctor’s sole discretion” suggest they may have confused the guidelines with another NHMRC document titled Medical genetic testing: information for health professionals.3 This document discusses the legislative amendments briefly but aims, more broadly, to provide a source of information for health professionals and to assist them in communicating with patients when genetic testing is being considered. It provides support for the ordering and interpretation of results in the context of clinical decision making.

The guidelines, in contrast, explore the complex issues associated with disclosure, and provide practical tools, including scenarios, key points for good practice, and flowcharts to assist in decision making. Disclosure is only permitted if it is in accordance with the guidelines, and is likely to be a lengthy and involved process.