7 August 2002

"A recent media article stating that 'Privacy laws risk lives' is inaccurate. Under the Privacy Act if a genetic test is conducted on an individual, then they have a right to know the results of the test," said Federal Privacy Commissioner, Malcolm Crompton.

"The situation is less clear over the question of whether the test results of one family member should be circulated to other family members who share a similar genetic make-up to the tested individual.

"Disclosure of health information is a delicate issue and one where it is very important to strike the right balance between the wishes of patients and the interests of their relatives.

"It is clear that the Privacy Act does not prevent doctors from disclosing health information to patients where there is a serious and imminent threat to their lives--even when this health information is about their relatives.

"The Privacy Act specifically states that an organisation (or doctor in this case) may use or disclose information if it believes that the release of the information will lessen or prevent a serious and imminent threat to an individual's life, health or safety.

"However, when it comes to the situation where a person has returned a positive test for a genetic disease, the issues are more complex. As the Act currently stands the individual whose genetic test indicates they are likely to develop a particular condition may in some circumstances (other than in an urgent situation) be able to prevent their doctor from disclosing the results to their relatives even though the results may have implications for them.

"Balancing the privacy rights and wishes of the individual with the interests of their relatives (who may want to know if they are genetically pre-disposed to a disease) is not an easy task. A number of people are generally involved in balancing this issue including the patient, their doctor and genetic counsellors.

"In a submission to the Joint Inquiry into the Protection of Human Genetic Information conducted by Australian Law Reform Commission/Australian Health Ethics Committee, I have recommended that the Privacy Act should be changed to provide for disclosure of health information in limited circumstances, in line with appropriate guidelines (approved by an authoritative body), and with the disclosure process involving professionals such as genetic counsellors.

"The intent of the Privacy Act is to ensure the responsible handling of patients' health information in the health sector, in the context of supporting good medical practice. It is not about putting peoples' lives at risk by reducing the flow of vital information in life threatening circumstances," said Mr Crompton.

"The National Privacy Principles, which are at the core of the federal Privacy Act, build on the culture of confidentiality and good clinical decision making that underpins the health sector.

"Guidelines on Privacy in the Private Health Sector, released by my Office last year, state that:

A 'serious and imminent' threat to an individual's life, health or safety relates to harm that could be done to any person (including the individual seeking treatment and care).A 'serious' threat must reflect significant danger, and could include a potentially life threatening situation or one that might reasonably result in other serious injury or illness. Alternatively, it could include the threat of infecting a person with a disease that may result in death or disability.

"My Office continues to work closely with health service providers, community representatives and government organisations, as it has over the last few years, to help get the balance right in this area. People can be confident that if their life is at risk, the Privacy Act will not prevent their doctor from disclosing important information to them," said Mr Crompton.

Web links: Guidelines on Privacy in the Private Health Sector (November 2001) OFPC ALRC/AHEC Genetics Inquiry Submission (March 2002)