''Greenberg v. Miami Children's Hospital Research Institute'', 264 F. Supp. 2d 1064 (S.D. Fla. 2003), was a decision by the
which ruled that individuals do not own their tissue samples when researchers take them for testing.
History
The plaintiffs in this case were a group of parents of children who had
Canavan disease
Canavan disease, or Canavan-Van Bogaert-Bertrand disease, is a rare and fatal autosomal recessive degenerative disease that causes progressive damage to nerve cells and loss of white matter in the brain. It is one of the most common degenerative ...
and three
non-profit organizations
A nonprofit organization (NPO) or non-profit organisation, also known as a non-business entity, not-for-profit organization, or nonprofit institution, is a legal entity organized and operated for a collective, public or social benefit, in co ...
who developed a confidential Canavan disease registry and database.
The parents provided their children's tissue for research on the disease and the non-profit groups aided in the identification of other affected families.
The defendant was Reuben Matalon, who received these tissue samples and used them to isolate and patent the Canavan gene sequence.
He subsequently developed a genetic screening test for it and began claiming
royalties whenever the test was used.
The Miami facilities where he did his research, including
Miami Children's Hospital, were also defendants.
Decision
The court dismissed the plaintiffs' claims that the defendants did not provide
informed consent, conducted a
breach of fiduciary duties, concealed the patent, and misappropriated
trade secrets
Trade secrets are a type of intellectual property that includes formulas, practices, processes, designs, instruments, patterns, or compilations of information that have inherent economic value because they are not generally known or readily a ...
.
The court did uphold the plaintiffs' claim of unjust enrichment at the expense of the donors of tissue, writing that "the facts paint a picture of a continuing research collaboration that involved plaintiffs also investing time and significant resources."
Significance
The case set a precedent for determining ownership of donated tissue samples.
References
External links
*
Canavan Foundation's press release
{{Medical ethics cases
2003 in Florida
2003 in United States case law
United States District Court for the Southern District of Florida cases
United States property case law
Bioethics