Greenberg v. Miami Children’s Hospital Research Institute

Canavan disease was a very rare and always fatal degenerative brain disorder affecting young children. There was no cure and those afflicted typically did not live past the age of ten. Greenberg (plaintiff) approached Dr. Matalon (defendant), a research physician, to discover the gene sequence of Canavan disease so that tests could be developed to determine carriers of the disease. Greenberg convinced Canavan families worldwide to donate tissue, blood, and financial support to Matalon’s project. Through the efforts of Greenberg and Matalon, a Canavan registry was developed containing epidemiological, medical, and other information about the families who had donated material. Matalon then became affiliated with Miami Children’s Hospital Research Institute (the Institute) (defendant) and Miami Children’s Hospital (MCH) (defendant), but continued his research work on Canavan disease with Greenberg and the participating families by accepting additional tissue and blood samples and financial support. In 1993, Matalon isolated the gene responsible for Canavan disease and a year later, unbeknownst to the families, filed a patent application for the genetic sequence he identified. Greenberg and the families were never informed that Matalon intended to seek a patent on the Canavan research. In 1997, Matalon was listed as the inventor of the gene patent and he and MCH began restricting any activity related to Canavan disease without compensation. Greenberg and the families filed a six-count complaint against Matalon and MCH alleging lack of informed consent, breach of fiduciary duty, unjust enrichment, fraudulent concealment, conversion, and misappropriation of trade secrets and sought damages along with patent royalties. Greenberg and the families claimed that all tissue, blood, and financial support provided to Matalon was done for the purpose of carrier detection, identifying mutations of the disease, and providing testing that would benefit the public at large. Greenberg requested a permanent injunction restraining Matalon and the Institute from enforcing the Canavan gene patent rights. The district court rejected Greenberg’s claims and Greenberg appealed.