ABC Four Corners - Body Corporate (2010)

Body Corporate

Reporter: Andrew Fowler

Broadcast: 06/09/2010

Right now across the globe there is a major legal and scientific battle raging over one simple question: should we allow individuals and corporations to patent genes? Some biotech companies say yes, claiming patents reward medical research and promote the investigation of life saving treatments. Others see it very differently, describing patenting as a biotech land-grab that's less about patients and more about greed.

Liam is five years old. As he grew, his parents realised he had a condition that made learning difficult. Then he had what seemed to be an epileptic fit. His doctor thought the young boy had Dravet syndrome, but the only way to be sure was to have a genetic test to see if Liam had a crucial gene linked with epilepsy.

It should have been straightforward. After all, Australian scientists discovered the gene, linked it to epilepsy, patented it and developed a diagnostic test. The problem is that those researchers sold the rights to another Australian company that wants a return on its investment. To make that return it charges a license fee, which means it costs $2,000 every time the test is carried out in Australia.

The hospital where Liam was being treated couldn't afford to pay the fee, and instead sent the sample to be tested overseas where they were charged just one third of the original asking price. But this option took more time, leaving the young boy and his family waiting in distress.

Liam's family are not the only ones frustrated with a situation that allows a company to charge whatever it likes to confirm a patient has a serious health condition, simply because it holds patent rights to a particular gene.

And consumer health activists are not sitting still. In the United States, they took the company that held patent rights over a gene linked to breast cancer to court. The activists argued it was illegal to hold patents on naturally occurring mutant breast cancer genes. The judge agreed, and now the issue is set to be tested at the very top of the American legal system. In Australia, a similar court battle is looming.

Millions of dollars now hang in the balance. Patients are understandably confused and the biotech companies will not easily give up their rights. They warn that without a patent, medical research will diminish and patients will suffer.

This week on Four Corners, reporter Andrew Fowler travels to the United States and around Australia to hear from both sides in this high-stakes battle. He talks to the researchers, patent lawyers and families who have been forced to pay significant amounts of money to find out if they have genes linked to potentially life-threatening conditions.

Who is right? Can the very basis of life itself be patented and sold? Is it possible that a unique gene that makes us what we are could be patented by someone we don't know and then franchised out to a major corporation?

https://forums.mvgroup.org/index.php?showtopic=36384