Genetic Property Rights on Trial
LONDON – In early February 2010, a United States federal district court in New York began deciding a landmark case as to whether individuals have a “right to know” about how their own genomes can dictate their future health. The case, American Civil Liberties Union v. Myriad Genetics , may have a tremendous impact on medicine and science.
The questions on which the case turns are whether genetic patents help or hamper research, and whether patients should have to pay a license fee to a biotechnology corporation to be tested for predisposition to disease.
One of the plaintiffs is Lisbeth Ceriani, a 43-year-old woman with breast cancer whose doctors recommended that she be tested for two genetic mutations involved in some hereditary forms of the disease. Myriad Genetics, the sole test provider in the US – it holds a patent on the genes themselves , not just on the diagnostic test – did not accept her insurance, and Ceriani could not afford to pay for the test. So she remained ignorant, as did her physicians – with possible ramifications for her clinical care. Five other plaintiffs – along with major medical bodies – tell similar stories.