Honors Scholars Class Project: Greenberg v. Miami Children's Hospital et al.
Canavan disease is an uncurable degenerative disease that causes childhood death and is most common among Ashkenazi Jews. After Daniel and Debbie Greenberg lost two children to the disease, they decided to become involved in prenatal testing of genetic disorders affecting the Jewish population. They founded the Chicago chapter of the National Tay-Sachs and Allied Diseases Association and through their work met Dr. Reuben Matalon, a researcher at the University of Illinois in Chicago. They convinced Dr. Matalon to focus his research on Canavan disease in the hopes that he would be able to isolate the gene and provide prenatal testing that was accessible and affordable for the public.
The Greenbergs donated tissue samples from themselves and their children as did over 160 other families. They also founded the Canavan Registry and donated money to the effort. In 1993, Dr. Matalon, who had moved to Miami Children's Hospital, isolated the Canavan gene. In 1996, the Canavan foundation began offering free testing. However, in 1997, Miami Children's Hospital received a patent on the gene and the Canavan Foundation was forced to stop offering the free screening. None of the families involved had been told that a patent was being sought.
The Miami Children's Hospital not only collected royalties on the patent but restricted the number of labs that could offer the testing and charged a fee beyond the cost of the test. Because of the restrictive licensing, many labs stopped offering the test.
In the Fall of 2000, the Honors Scholar Class of 2002 worked with professors from the Chicago-Kent legal clinic and the Institute for Science, Law and Technology, to file a pro bono lawsuit against Miami Children's Hospital and Dr. Matalon on behalf of the parents of the children with Canavan disease. Professors Laurie Leader, Ed Kraus and Lori Andrews led the group.
The brief argued that the patent was secretly obtained using the financial and genetic resources from the families that were donated for the public good, and the patent now limits the availability and affordability of the test as well as further research of the disease. It was argued that there was a breach of informed consent, a breach of fiduciary duty, unjust enrichment, conversion, misappropriation of trade secrets, and fraudulent concealment. The case was the first of its kind, taking the researchers to court concerning the control of a gene. The case subsequently settled.
In the News
Gene Patenting, Chicago Center for Jewish Genetic Disorders.
Peter Gorner, Parents suing over patenting of genetic test, Chicago Tribune, November 19, 2000, available at https://articles.chicagotribune.com/2000-11-19/news/0011190461_1_gene-test-researchers-human-genome-project.
Eliot Marshall, Genetic Testing: Familes Sue Hospital, Scientists for Control of Canavan Gene, available at science.sciencemag.org/content/290/5494/1062?related-urls=yes&legid=sci%3b290/5494/1062
Headlines, Miami Children's; Parents Carrying Genes for Fatal Canavan Disease Sue, Class Action Reporter, https://bankrupt.com/CAR_Public/001214.MBX.
Dashka Slater, A design for creatures that are half man, half animal has raised fundamental questions about what it means to be human. Two critics of biotechnology want the U.S. Patent Office to answer them, Legal Affairs, Nov.-Dec. 2002, https://www.legalaffairs.org/issues/November-December-2002/feature_slater_novdec2002.msp.