Even without gene patents, companies are monopolizing genetic data.

In June the U.S. Supreme Court ruled that patents on genes were invalid. Yet corporate intellectual-property claims can still harm patients.

The court struck down patents held by Myriad Genetics on two human genes linked to breast and ovarian cancers, BRCA1 and BRCA2. The decision ended the companys U.S. monopoly on testing those two genes for cancer-related mutations. But Myriad is now using a different tactic that restricts patient choice around genetic testing. The company has constructed a database of the genetic variants found in people who took its BRCA test. That unparalleled record of the natural variation in these important genescollected from patientsis claimed to be Myriads own intellectual property.

Doctors cant assess the significance of gene variants they find in their patients without free exchange of the kind of information held in Myriads database. It is as if patients radiological images were all examined by a single company that didnt give the medical community a chance to learn from them.

Myriads database prevents patients from easily getting second opinions when they receive diagnoses based on BRCA tests. Patients need to be able to seek confirmation that the gene variant they have really does mean what the testing laboratory says it means. That cant happen if Myriad is the only one with the data.

Late last year, I launched a grass-roots effort bringing doctors and patients together to free valuable data from BRCA1 and BRCA2 test reports. Colleagues of mine who see patients at cancer clinics now place copies of these reportswith identifying details removedin an existing public database called ClinVar, which is run by the National Institutes of Health. This project, called Sharing Clinical Reports, has now made more than 6,000 reports accessible. Efforts to enlist coperation from clinics around the country should free up tens of thousands more reports soon.

The medical community has condemned private databases that limit the dissemination of medical knowledge. The American Medical Association adopted a resolution in 2009 stating: "The use of patents, trade secrets, confidentiality agreements, or other means to limit the availability of medical procedures places significant limitation on the dissemination of medical knowledge, and is therefore unethical." A newer resolution, in June, calls for the release of all information generated by testing for genetic variants, with appropriate privacy protections. Were still far from seeing that come to pass. The medical community must prevent intellectual-property claims from being used to monopolize such vital data.

Robert Nussbaum is chief of the Division of Genomic Medicine at the University of California, San Francisco, and worked on the legal challenge to Myriads gene patents.

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