Australian guidance on genetics and patient confidentiality

25 January 2010

The Australian National Health and Medical Research Council (NHMRC) and Office of the Privacy Commissioner last month released new guidance for health practitioners on disclosure of genetic information to patients’ relatives. 

The guidelines set out requirements that must be fulfilled to permit such disclosure to a genetic (as opposed to legal) relative of a patient; disclosure in the absence of patient consent is permissible only where it is necessary to ‘lessen or prevent a serious threat to the life, health or safety of the patient's relative’ (see press release). This is in line with recent UK guidance on the same issue (see previous news).

Before making any such disclosure, health professionals – who should understand the genetic basis of the patient’s condition and be competent to take responsibility for decision-making, as well as documenting the process - must take reasonable steps to obtain patient consent; if this is not forthcoming they must discuss the case with other health practitioners with appropriate expertise before proceeding. Genetic information disclosed without consent should be limited to the minimum necessary, avoid identifying the patient (or revealing their lack of consent to disclosure), and only be made available to genetic family members ‘no further removed than third-degree relatives’.

The Office of the Privacy Commissioner (OPC) has ruled that under such circumstances obtaining contact information for the relatives in question from the patient who has withheld consent to disclosure would be impractial, and issued a Temporary Public Interest Determination to allow this collection legally.

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