Professor Loane Skene is Deputy Director of the Centre for Law and Genetics (Universities of Melbourne/Tasmania) and Program Director, Medical Ethics, Centre for Applied Philosophy and Public Ethics (University of Melbourne/Charles Sturt University). Her research interests include the legal regulation of genetic testing, assisted reproductive technology and euthanasia.

The incoming federal government should promote better understanding of privacy laws.

Complex and overlapping federal and state privacy provisions are jeopardising medical research and basic health care. It is increasingly difficult for epidemiologists to ‘link’ de-identified data from health records with information from other records, such as reports of birth defects, outbreaks of infectious disease, industrial and environmental accidents and coronial inquests. Linkage research of that kind helps avoid disease and injuries.

People who fall ill interstate sometimes cannot get important information from their health records at home. Doctors treating patients with genetic conditions are reluctant to warn the patient’s close blood relatives of their genetic risk so that they can be tested, if the patient will not agree.

Underlying these issues is a tension between an individual’s right to have personal information kept confidential and the protection of other people’s life or health. In many cases, the law supports disclosure but health professionals are wary because of uncertainty about their privacy obligations.

We need more public information about when personal information can be revealed to protect other people; and electronic health records so that our medical details are available to health professionals who are treating us in other states.