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17 Mar 2017

A new draft Framework on genetic testing could be relegated to nothing more than “a series of statements” if it is not accompanied by an implementation plan or funding, the AMA has warned.

The Commonwealth Department of Health has sought feedback on the draft National Health Genomics Policy Framework, which is a commitment between Commonwealth and States and Territories to work collaboratively to integrate genomics into the health system over time.

While the AMA supports the strategic priority areas in the Framework, and agrees with the issues and challenges identified, it is concerned by the lack of an implementation plan or funding to achieve its objectives.

“Both of these omissions risk relegating the Framework to only a series of statements without any impact on improving health outcomes,” the AMA submission said.

The AMA also questioned the decision to restrict the Framework to guiding the genomics policies and activities of public hospitals.

“Limiting its scope in this way ignores the capacity for the private sector to contribute to, and complement, public health services,” it said.

“Australia’s health system is built on a complementary system of public and private services. There is potential to increase efficiencies, and reduce waiting lists, by better utilising capacity in the private sector.

“This is not possible while there are barriers to patients accessing a full range of services in the private sector, such as limited or no MBS rebates for the range of genomic health services now in use.”

There is also no consistent, clear pathway for patients who start in the private sector but must move in and out of the public sector to fully benefit from access to genomic medicine.

“Clinical and testing services are primarily based in the public sector,” the AMA said.

“This means that patients who have entered the public health system, referred by their general practitioner or private specialist, end up on long waiting lists to be seen in public hospital clinics, then wait again for public sector laboratory testing.

“Feedback to general practitioners is often slow and may be incomplete, despite the GP’s responsibility to care for the patient and potentially track relatives of patients with newly-diagnosed genetic conditions.”

Furthermore, genetic counsellors, who should be a critical member of multidisciplinary teams providing care to patients, are largely restricted to practising in the public sector as they do not have access to indemnity cover or MBS rebates for providing services in the private sector.

“Genetic counsellors should be facilitated to practise in the private sector so that they can support GPs and private practice specialists in treating their patients,” the AMA said.

The AMA also called for more regulation of private operators who directly market genetic tests of dubious quality to people.

“Not enough is being done from a regulatory perspective to protect vulnerable consumers who are embracing a level of genomics via direct-to-customer testing sales,” it said.

“Most of these tests lack clinical utility and pose challenges in interpretation even to experts in the field.”

The AMA called for a national approach to raising public awareness of the risks and benefits of genetic testing, including promoting reasonable expectations.

Maria Hawthorne



Published: 17 Mar 2017