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An unusual trade secret case in Chicago pits a group of parents who carry a gene for a rare fatal disease against a Miami-based pediatric hospital and a researcher who used their tissue and histories to develop prenatal and pre-conception tests for the disease. The lead plaintiffs are Daniel Greenberg, who practices real estate law in the Chicago suburb of Homewood, Ill., and his wife, Debbie, the parents of two children who died of the hereditary degenerative disorder Canavan disease. To pass on the disease, which strikes mainly Jews of Askhenazi descent, both parents must carry the gene. Most victims die in childhood; 500 to 1,000 Americans are afflicted. Once they knew their children had Canavan, the Greenbergs established the first registry of afflicted families. The registry was among the alleged trade secrets appropriated by the researcher. REGISTRY AND RESEARCHER The families gave the registry information, and tissue and blood samples from their children, to medical researcher Reuben Matalon. He eventually affiliated with Miami Children’s Hospital Research Institute Inc., where he found the gene. In 1994 Dr. Matalon applied for a patent for the gene and for methods of screening for mutations associated with the disease. The ’635 patent issued in 1997 and was assigned to the hospital. The Canavan parents say that they did not know about the application until after the patent issued. The hospital turned to Marc A. Golden, president of New York’s Golden Group Intellectual Capital, seeking help in exploiting the patent. Once the tests were developed, they were licensed to a few labs around the nation. Golden, a lawyer formerly with New York’s Cravath, Swaine & Moore, has been quoted in news stories as saying that the number was limited to encourage a major national lab to take a license and promote the test widely. He was not available for comment. The American College of Obstetricians and Gynecologists recommends testing for all couples of childbearing age if both partners are Ashkenazi Jews. Greenberg, the other Canavan parents and several organizations that focus on genetic diseases and counseling claim licensing fees can make the test so costly that some potential Canavan carriers will not be tested and identified. Also, they don’t like the fact that the hospital has licensed only a limited number of labs and has set a ceiling on the number of tests they can do. Represented by lawyers associated with the Institute for Science, Law & Technology at Chicago-Kent College of Law, they sued the hospital and Dr. Matalon in federal court in Chicago on Oct. 30. Greenberg v. Miami Children’s Hospital, No. 00C 6779. The suit charges trade secret misappropriation, breach of informed consent, breach of fiduciary duty, unjust enrichment, conversion and fraudulent concealment. Greenberg declined to comment for publication. However, in previous news coverage, he has been quoted as saying, “If someone had told me from Day One that they were going to make money from this, I might very well not have cooperated.” The suit asks for royalties from the patent and unspecified relief. In similar cases, plaintiffs have ultimately asked that the patent be assigned to them. Trade secrets expert James Pooley, a partner at Palo Alto, Calif’s Gray Cary Ware & Freidenrich, said, “Once a patent has issued, one allegation you see in these cases is that the invention was not created in a vacuum but was built on a platform of information taken from another place.” Pooley said that he hasn’t seen a case involving a registry of families with a specific genetic trait. He said that the ultimate remedy the Greenbergs and other families might seek is reassignment of the patent rights to them. They could also claim that “the material used to come up with the invention actually constitutes the invention, and the claimed inventor is not the real inventor at all,” he suggested. The hospital said in a statement that it is “evaluating the merits of the case and preparing a stringent defense.”

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