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Gene patents pose challenge to doctors treating genetic disorders

In Canada, doctors are challenging legally-held patents on genes. The Children’s Hospital of Eastern Ontario has taken the case to the Federal court, citing barriers that gene patents present in providing tests for genetic diseases.

In the U.S., patents on naturally-occurring human genes are no longer valid since a Supreme Court ruling in 2013. However, companies can still hold patents on tests used to screen for certain genes. Tests for long QT syndrome, a genetically-inherited heart disorder that can lead to fainting or death during exercise, cost $4,500 per person due to patents held by US companies.

People often are not aware that they carry long QT syndrome until they experience the symptoms – which can be fatal. Testing for the gene in people with a family history of the disorder can help doctors prevent incidents in high-risk patients before they happen. However, the US patent does not allow the Ontario hospital to conduct the test. Gail Graham, head of the genetics department at the hospital, explains why this is problematic on medical and ethical grounds.

“If we were to incidentally discover that that child would have long QT syndrome, that wasn’t what we were looking for, but we found that it was there, we would be prevented from learning that information and prevented from transmitting it to the patient and the family because of the existing patents. What we are trying to achieve from a broader perspective is a court ruling that says, ‘No, these particular patents are invalid or would not be infringed by the type of testing we would like to do.’”

With patents in place, doctors are limited in their ability to identify genetic disorders in patients. By eliminating the restrictions posed by patents on genes and gene technologies, the hospital hopes to pave the way towards better diagnoses of genetic disorders and improved treatments.


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