This week's BioNews reports on a landmark legal dispute over a gene patent between scientists and a group of families affected by Canavan disease. The case, in which the families are suing the Miami Children's Hospital for patenting a genetic test for Canavan disease, is the first of its kind. But it may not be the last.
The case has highlighted some of the potential tensions between families and scientists in the discovery of disease genes and the development of genetic tests. Whilst the scientists carry out the work, the families are very involved in the process of discovery by donating blood and tissue samples. So, what happens when the gene test is patented and the patent holder starts to charge royalty fees for use of the test?
One way of getting around such a dispute emerged a few weeks ago, when it was revealed that a patient support group and a group of scientists applied for a patent jointly. PXE International, the support group for those affected by pseudoxanthoma elasticum, sought to avoid the problems faced by the Canavan families by taking their own commercial interest in the research.
The two different instances serve to demonstrate that gene patenting is not just an issue for biotech companies, but also for universities and patients. It is also sometimes about facilitating access to a test by keeping costs low, rather than hindering access by charging large royalties. After all, patent holders are under no obligation to charge for the use of their test: some have even made them freely available, only seeking a patent in order to prevent others from stepping in and charging large royalties.
But commercial pressures can make themselves felt, even in public institutions. Universities often charge royalties on patented tests in order to recoup not only the cost of carrying out the research, but also the cost of filing the patent application, which is itself expensive. Perhaps the PXE International case shows a way forward. But with patient groups on one side wishing to keep costs down and research organisations on the other wishing to recoup funds spent on research, such collaborations may not be without their tensions.
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