Chicago Tribune: Parents Suing over Patenting of Genetic Test

Gary Van Domselaar • November 20, 2000

Chicago Tribune: Parents Suing over Patenting of Genetic Test

"In the first case of its kind, the families of dead and dying children cursed by a genetic brain disease are suing the researchers they once trusted but whom they now view as trying to profit from their children's illness.

Using blood and tissue from two Chicago-area children and others who died of Canavan disease--a rare neurological disorder also known as spongy degeneration of the brain--researchers found the gene responsible for the illness and in 1997 received a patent on it.

Chicago-area parents Daniel and Debbie Greenberg, and other parents involved in the research, say the patent and a commercial test with strictly enforced licensing has impeded further study into the disease. The tests, given to people thinking about having children but fearful of passing on the disease, are restricted in a number of ways by the patent holders, ensuring that more children will be born into a life of pain and hopelessness, the families contend.

The lawsuit, filed pro-bono by the Chicago-Kent College of Law, marks the first time tissue donors have taken researchers to court for the control of a gene. The suit does not directly challenge the patent, but instead alleges that the researchers secretly obtained it using the genetic information and financial resources that had been donated for the public good and began charging royalties and limiting the availability of testing.

Defendants include the Miami Children's Hospital, where the gene was discovered and the test developed, and Dr. Reuben Matalon, the lead researcher.

The lawsuit has attracted little attention thus far, but could help establish rules of ownership of human genes at what many believe is the dawn of a biotech revolution."

Full Story:
http://chicagotribune.com/news/printedition/article/0,2669,SAV-0011190461,FF.html

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