In the news
Find related articles on
Restrictive licensing delays research into rare disease
Source: Nature News
Nature News reports on the issue of overly-restrictive commercial licensing holding up research into cures for rare diseases.
They give the example of a French researcher unable to use a mouse model with a tagged version of the gene implicated in Rett syndrome, developed by Novartis in the US, because of licensing restrictions – even though Novartis researchers are no longer using the model themselves. Despite years of attempts, no Rett syndrome researcher has been able to obtain access.
The scientists who developed the model have reportedly said that they would like to grant access, but are unable to do so under the terms of the licence. Outside labs have now stepped in to remake the mouse model; Adrian Bird of the Wellcome Trust Centre for Cell Biology in Edinburgh says that his lab has re-engineered the mutated mice and will distribute them once the breeding population is large enough.
Legal restrictions have long been one of the issues preventing the free sharing of information and materials between researchers, but there are indications that the situation is becoming worse. A 2007 study on this topic found that requests by academics for research materials from other labs were being turned down almost twice as frequently as had been the case late 1990’s. A study from this year found that competitive environments decrease the likelihood of sharing, as does awareness of legal restrictions and the norms of the culture in which the researchers are working.
Research into rare diseases is big business - witness sector leader Genzyme’s recent sale to Sanofi-Aventis in a deal reported to be worth over $20 billion – and a company’s value in this area is dependent upon the range and strength of the licenses that it holds, but when this intellectual property inhibits the development of therapies it becomes morally problematic. It is not clear what the answer to this issue is - without intellectual property rights commercial laboratories wouldn’t have the incentive to develop therapeutic tools in the first place - but it seems evident that it shouldn’t be the patients who suffer the consequences.