Greenberg v. Miami Children’s Hospital Research Institute

Facts

Greenberg (Plaintiff) and the Chicago Charter Chapter of the National Tay-Sachs and Allied Diseases Association, Inc. (NNTSAD) contacted Dr. Matalon, a research physician affiliated with the University of Chicago, to get his assistance with treatment of Canavan's disease. Canavan's disease is a genetically inherited fatal progressive brain degenerative disorder afflicting children of eastern and central European Jewish decent. Most of the afflicted children do not live past the age of ten. Greenberg (Plaintiff) and the NTSAD provided financial support for Dr. Matalon's research and convinced parents of children with Canavan's disease to provide tissue samples including blood, urine, and autopsy samples. A confidential database was compiled registering the epidemiological and medical information of all of the families participating. Plaintiff, the NTSAD, and the other family members involved understood that any research and treatment developed that related to this collaboration would remain in the public domain and be provided to those afflicted with Canavan's at an affordable and accessible cost. Dr. Matalon became associated with Miami Children's Hospital Research Institute (Defendant), where research discovered the gene responsible for Canavan's disease. This discovery resulted directly from the use of the tissue samples and the confidential pedigree information contained in the confidential database. Unknown to Plaintiff, Dr. Matalon applied for and received the patent for the genetic sequence that was discovered, which allowed the doctor and Defendant to restrict any activity related to the Canavan's disease gene, including all testing and treatment. Matalon and Defendant started selling licenses to perform testing and research, restricting public access to any information unless royalty fees were paid, and threatened enforcement actions. Plaintiff sued, claiming: (1) lack of informed consent; (2) breach of fiduciary duty; (3) unjust enrichment; (4) fraudulent concealment; (5) conversion; and (6) misappropriation of trade secrets. Plaintiff sought a permanent injunction to prevent enforcement of the patent rights, and claimed that Defendant and Matalon were unjustly enriched from the royalties they were charging for testing and from federal research grants that followed the discovery. The trial court dismissed, and Plaintiff now appeals.