New report recommends national genetic advisory body

The report on the protection of human genetic information released yesterday by the Australian Law Reform Commission and the NHMRC's Australian Health Ethics Committee (AHEC) was the most comprehensive review on the laws covering genetic information and privacy in the world, according to Prof Don Chalmers, dean of law at the University of Tasmania.

"If we were to take up all of the recommendations we would be setting the standard for best practice for the rest of the world," said Chalmers, who was a consultant and a member of the advisory committee to the ALRC/AHEC inquiry that produced the report.

Essentially Yours: The Protection of Human Genetic Information in Australia, a 1200-page report containing 144 recommendations about dealing with the ethical, legal and social implications of the so-called 'new genetics', was tabled in federal parliament yesterday after a two-year process that garnered an extraordinary response and level of public consultation, he said.

According to Dr Kerry Breen, chair of the AHEC, the inquiry benefited greatly from the public consultative process.

"In general, we found strong public support for continued research aimed at providing better medical diagnosis and treatments-but there is also some general anxiety about how we might regulate such rapid scientific advances in the public interest," Breen said.

"In response, we have made recommendations targeted at improving the system for ethical oversight of genetic research, as well as suggesting improvements for the quality and delivery of medical genetic services."

Among the recommendations are a proposal to establish a national advisory body to provide high-level, technical and strategic advice on current and emerging issues in human genetics, and a strengthening of ethical oversight of genetic research including the operation of human genetic databases.

"The challenges of the new genetics demand a broader mix of strategies, involving stronger ethical guidance and oversight, industry codes, community and professional education, and-recognising the complexities and the fast pace of change-a new standing advisory body, to be called the Human Genetics Commission of Australia," said Prof David Weisbrot, president of the ALRC.

"Genetic testing is an area that is so personal and so sensitive that it's critical we get this right -- and do so now -- to avoid the crisis of confidence and the public backlash that inevitably would follow from poor or unethical practices."

Chalmers said one of the most unique ideas in the report was the idea of treating genetic samples as information covered by privacy laws. "This means that the whole regime of collection, storage, access and release will be subject to privacy laws," he said. "There will also be a new criminal offence of taking somebody's sample and trying to have it tested without their consent or knowledge."

But he warned that there would be several hurdles to overcome before the recommendations could be put into practice. Foremost among them would be a need for harmonisation of federal, state and territory privacy laws.

"These are really very well-balanced and well-reasoned approaches to a whole series of issues. The challenge now is for the recommendations to be considered by a whole series of bodies. We need to have a review of the inconsistencies in the privacy regulations," said Chalmers.

Assoc Prof Eric Haan, head of SA Clinical Genetics Services at Adelaide's Women's and Children's Hospital, another member of the advisory committee to the inquiry, said that from a clinical genetics point of view, one of the key recommendations was the recommended provision for doctors to be able to disclose confidential information to a genetic reletive to avert serious threat to an individual's life, health or safety.

"Basically what they are saying is that it may be appropriate to share information with a patient's family. It may be permissable for a doctor to go beyond the confidentiality tradition in medical practice if he believes the risk to the family is very great," he said.

The report also recommended that while insurance companies could make use of genetic information for underwriting purposes, they should be required to adopt improved practices to ensure scientifically reliable and actuarially sound use of genetic information.

The full report and a summary of its recommendations can be found at the ALRC's web site: www.alrc.gov.au