Babies May Die Blocked by Drug Patent

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In a disgusting and shocking case out of Australia, it has been discovered that Genetic Technologies, a Melbourne-based genetics research facility, is holding rights to DNA that could prove vital to the screening and treatment of Dravet’s syndrome in infants.

Dravet’s is a epilepsy found in babies, that causes severe seizures that damage the brain. Diagnosis is usually given at 18 months to provide the child long enough to grow so that medications will not damage their underdeveloped system. However, testing for the gene that has been found to cause Dravet’s, the SCN1A gene, is vital. And Genetic Technologies, the company that holds rights to that DNA, refuses to cooperate so hospitals can conduct that screening.

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

This isn’t the first time that Genetic Technologies has been involved in controversy over their genetic right holdings. Last month, they caused outrage when they threatened to sue all hospitals that test for the genes that cause breast cancer.

When asked for comment, CEO Mervyn Jacobson replied, “The question is, are public hospitals allowed to break the law and breach patents granted by the Australian Government?”

Perhaps a more fair question would be: “Is it right for a company to hold information vital to saving the lives of millions of people for the sake of their greed?”

I think someone should ask Mr, Jacobson if he would be so forgiving if one of the babies dying of seizures was his own. Or perhaps he would find that a matter of Australian law, and not a question of morality. Or basic human decency.