Zoe Battaglene spends all her school holidays in hospital. She suffers from cystic fibrosis. Her father knows that her only cure lies in ‘gene therapy’, the development of which relies on genetic research. However, now an extraordinary legal battle over who 'controls’ DNA means that Zoe might have a lot longer to wait before she can hope to be cured.

Until recently, 95% of DNA was considered ‘junk’ or ‘non-coding DNA’ and thought to have little relevance to genetic research. However, in the late 1980’s a genetic research group called the Genetic Technologies Group (GTG) realised it could hold the key to curing genetic diseases. They paid twenty million dollars to secure worldwide patents, giving them the right to charge licence fees from anyone wishing to research on this DNA.

Genetic Technologies Group has a lot to answer for. Many question the validity of the patent. To some, it seems extraordinary that such material does not automatically belong in the public domain. For others, the research on junk DNA is nothing new and GTG should never have been granted the patent. “The usefulness of non-coding DNA in biomedical research has been recognized for decades,” claims Dr Suthers.

However, the patents’ legitimacy has proved hard to challenge. GTG’s financial clout is formidable and court cases of this kind are hard-won. “These are brutal brawls and it’s not the better person winning but the richer person winning,” complains Dr Cantor of Sequenom. He was disgusted when he had to pay $ I million for a licence. GTG has also been accused of using bully-boy tactics to extract its licence fee. “The amount of pressure they put on us was basically blackmail” he says.

Most frightening of all is the damage GTG’s actions could have on public health. They claim that they are working medical miracles for women in New Zealand. They have opened up a cutting edge centre offering free breast cancer tests that provide the results rapidly. But they are simultaneously charging the local hospital vast sums of money for all genetic tests they might use to diagnose patients like Zoe Battaglene, The hospital will find now themselves hard pushed to offer this kind of service to new patients.

GTG claims it has the people’s best interests at heart. The all-embracing patent allows the company to act as they choose all within the parameters of the law. Their power seems almost endless. But criticism is growing about the patenting laws and their unforeseen implications. “We will end up in a circumstance where academic researchers will find it difficult to pursue their brightest ideas without a phalanx of lawyers at their elbow,” prophesies Dr Francis Collins. There are fears that the GTG’s behaviour will spawn a spate of copycat patenting activity from various different companies all wishing to tie up medical research and reap the financial rewards. But if research, diagnoses tests and cures fall under company ‘ownership’, legal proceedings could spiral out of control leaving little time or money to deal with the real health issues at stake.

Produced by ABC Australia.