Honors Scholar Class Project:
Greenberg v. Miami Children's Hospital et al.
Canavan's 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's 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's 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."
http://www.jewishgeneticscenter.org/advocacy/gene/
Peter Gorner, "Parents suing over patenting of genetic test," Chicago Tribune, November 19, 2000.
Eliot Marshall, "Genetic Testing: Familes Sue Hospital, Scientists
for Control of Canavan Gene, http://www.fordham.edu/law/faculty/patterson/tech&hr/materials/canavan.html
Headlines, "Miami Children's; Parents Carrying Genes for Fatal
Canavan Disease Sue," Class Action Reporter. http://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.
http://www.legalaffairs.org/issues/November-December-2002/feature_slater_novdec2002.html
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