HOW DOCS MADE A BUCK OFF SICK JEWISH KIDS
Parents Suing over Patenting of Genetic Test


From USA Jewish.com
November 21, 2000


They Say The Researchers They Assisted Are Trying To Profit From A Test For A Rare Disease.

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.

(Chicago Tribune)