Sick Babies Denied Treatment Due to Company’s Patent on Gene

Julie Robotham
Sydney Morning Herald
December 1, 2008

BABIES with a severe form of epilepsy risk having their diagnosis delayed and their treatment compromised because of a company’s patent on a key gene.

It is the first evidence that private intellectual property rights over human DNA are adversely affecting medical care.

Deepak Gill, head of neurology at the Children’s Hospital at Westmead, said he would test at least 50 per cent more infants for the SCN1A gene – which would diagnose the disabling Dravet syndrome – if the hospital could conduct the test in-house.

But rights to the gene are controlled by the Melbourne-based Genetic Technologies, which has already threatened to stop public hospitals testing for breast cancer gene mutations, and the hospital will not risk a similar problem.

Specialists are sending blood samples to Scotland, and only babies whose seizure patterns closely resemble Dravet syndrome are tested. This means children with slightly different symptoms may be treated with the wrong medicines for months, potentially retarding their development.

“It’s frustrating that we can’t get the test done readily,” Dr Gill said. “If we could include it as part of the work-up, we could identify them early.”

At present the diagnosis is often delayed until the child is 12 to 18 months old. This is after the optimum time for treatment with strong drugs that are unsuitable for most babies with epilepsy but are used for infants with Dravets to control severe seizures that can damage the brain. Standard childhood epilepsy medications are ineffective with Dravets and may worsen it, Dr Gill said.

The situation comes amid growing concern among doctors and medical researchers over the ethics of granting private ownership to human DNA. A Senate inquiry announced this month will investigate the effects of gene patenting on health-care.

SCN1A is the most important epilepsy gene discovered, Dr Gill said, and is abnormal in about 70 per cent of children with Dravet syndrome, which affects about one in 30,000 babies – almost 10 per cent of infant epilepsy cases.


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