In a sad sign of what can happen when companies get greedy, we have what may be the first example of private intellectual rights over human DNA hurting medical care.
Worse still, this case is affecting childrens' medical care, specifically children with epilepsy. A disabling condition called Dravet syndrome needs different treatment than epilepsy early in an infant's life, but the best way to diagnose it is to test for the SCN1A gene.
Unfortunately, Melbourne-based Genetic Technologies holds the patent for the gene, and has already threatened to stop public hospitals from testing for breast cancer gene mutations. As a result, public hospitals in Australia are afraid to test infants themselves and have to send blood samples to Scotland. And that process gets prohibitively expensive quickly, so many infants who don't fit the pattern of Dravet syndrome perfectly don't get tested.
Genetic Technologies claims that it might be willing to not prosecute for violations by public hospitals, but hasn't made any guarantees.
To learn more about this problem:
- read this Sydney Morning Herald piece