Genetic Testing: Call For Reform
The Age
Friday July 21, 2000
Ground-breaking research that documents six cases of possible discrimination against healthy Australians based on genetic tests has prompted urgent calls for legal reform.
Australia lags behind Europe and most American states in not having specific laws regulating the use of genetic testing in employment and insurance.
The debate comes as the completion of the human genome is set to increase the range of genetic tests for medical conditions and to extend their use to predicting behavioral traits.
The cases, documented by Melbourne University legal researcher David Keays, include people being asked to undergo genetic testing to get a job and a bank loan.
Australian Democrats deputy leader Natasha Stott Despoja described the cases as ``dynamite".
Liberty Victoria president Felicity Hampel, QC, said it was wrong to deny a person a job, loan or insurance unless they undertook a genetic test that might predict a future problem. ``It's interfering with what as a society we always accepted as being fate," she said, adding that some would call it the ``will of God".
A spokeswoman for Attorney-General Daryl Williams said the Federal Government was considering further policy on genetic information.
She refused to comment on the likely timing or form of the government response but said it recognised a need to ensure genetic testing was not used for unjustifiable discrimination.
The Investment and Financial Services Association, representing life insurers, opposes regulation. But the Insurance Council of Australia, representing general insurers, does not object if disclosure principles remain.
Mr Keays said the cases, from the past five years, showed genetic discrimination was a current concern and not just a futuristic fear. They included:
* A 34-year-old opthalmologist refused a bank loan to buy equipment unless he got income insurance. He was refused cover unless he passed a genetic test for myotonic dystrophy, a muscular disease that runs in his family. He took the test, found he didn't have the gene and got the loan.
* An 18-year-old school-leaver denied a public service job unless he passed a genetic test for Huntington's disease, a severe condition that hits in middle age. He had a 50-50 chance of having the gene but, having seen his mother suffer, preferred not to know. At times he threatened to kill himself if he ever found out. On a second appeal, he was offered the job - with reduced superannuation.
* A 37-year-old quality manager refused an increase in a pre-existing income insurance policy after a research project genetic test revealed he had Charcot-Marie-Tooth disease - a physical condition that, even if it progressed from its mild state, would not affect his ability to earn income in his desk-bound work.
The director of the ethics program at the Murdoch Children's Research Institute, Julian Savulescu, said the fear of discrimination could prevent people from taking genetic tests, so they would miss out on the health benefits that the genome promised. But he felt legislation should be a last resort.
Mr Keays said genetic discrimination would be justified in rare circumstances, for example to protect public safety, but laws were needed to specify those areas.
``Genetic discrimination is occurring in Australia. We need a legislative response to protect people against it," he said.
His call was backed by Senator Stott Despoja and genetics law experts Associate Professor Margaret Otlowski, of the University of Tasmania's law school, and the University of Melbourne's Professor Loane Skene.
Last week High Court judge Michael Kirby, a member of the ethics committee of the Human Genome Organisation, spoke out on the need for laws and practices to avoid irrational and unfair genetic discrimination.
But Liberty Victoria's Ms Hampel said current disability discrimination probably would apply to genetic discrimination and discounted any need for law reform.
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© 2000 The Age