Patients in joint gene patent application

A patient support group is to file a joint patent application with the research team that identified a gene involved in a rare genetic condition, pseudoxanthoma elasticum (PXE). Members of the PXE International support group provided scientists at the University of Hawaii with blood and tissue samples from patients with the disorder, which causes the skin, eyes and arteries to harden. The alliance could become a model for handling intellectual property issues that arise from collaborations between patient's groups and researchers, reports last week's Nature.

Sharon Terry, president of PXE International, says the group wants to ensure that licences for any resulting genetic tests will be inexpensive and widely available. It has set up its own blood and tissue bank, and scientists wanting to use the samples must first agree to the group's terms. Ms Terry, whose son has PXE, says that if the university insists on a fee for the new test, the group will push to keep it low and will make sure any profits are split between the collaborators.