Feds to fund new human genetics advisory committee

The federal government has used the budget to announce that it will provide AUD$7.6 million over four years to establish and fund the activities of a new human genetics advisory committee.

As a principal committee of the National Health and Medical Research Council (NHMRC), the new committee will provide advice to the government on the ethical, legal and social implications -- including any impact on human rights -- of current and emerging issues in human genetics and related technologies.

The committee will also manage the process of change in relation to human genetics including public engagement on these issues, development of policy statements and national guidelines in this area, and assistance of relevant bodies to identify research priorities.

The announcement has been welcomed by Democrat senator Natasha Stott Despoja.

"I think [the committee] is important first of all for the community to be engaged in the debate about genetic technology and scientific advances," said Stott Despoja. "It will give legislators, decision makers [and] policy people the opportunity to construct a framework that takes into account the pressing health, legal, social, and of course political considerations, as a result of this rapidly changing science."

The committee will consist of members representing consumers, genetics research, clinical genetics, bioethics, law and industry, and will be appointed by the minister, following consultation with relevant stakeholder organisations. "It is anticipated that the establishment of the new principal committee will coincide with commencement of the new NHMRC triennium in January 2006," a spokesperson from the NHMRC said.

Among the areas on which the committee may provide advice are:

• Genetic testing, including its application to life insurance
• Genetic profiling
• Pharmacogenetics
• The need for genetic counselling services
• The need for public and professional education and strategic priorities for research

Stott Despoja sees genetic privacy as an absolute priority issue for the committee. She said she would like to see the committee consider issues surrounding genetic discrimination, such as what sort of information can be stored, what consent provisions surround the collection of information about people and their DNA, what can be done with the information, and whether or not it can be used to discriminate against someone on issues like insurance or employment.

The committee's charter also allows it to identify any emerging issues.

Stott Despoja said she was concerned that the committee would not be a stand alone, statutory, independent body as originally recommended by a recent report by the Australian Law Reform Commission and Australian Health Ethics Committee, Essentially Yours: The Protection of Human Genetic Information in Australia.

"Nonetheless, it's still a good start," she said. "And $7.6 million over four years is a good start. I'd like to see perhaps some more details as to what that money will be used for, who will be on the committee, how they'll be chosen, how they receive reference, are they up to the minister to determine? Or will the NHMRC or the committee itself determine the areas into which it inquires?

"It's endlessly frustrating to watch the science expand and government and policy makers put their heads in the sand. Maybe this committee is the first sign that governments realise they've got to grapple with these issues."