This is the latest battle over who controls, as well as who benefits from, medical research related to genetics. In 1987 the Greenbergs, a family devastated by having two children born with Canavan disease collaborated with a scientist, Reuben Matalon, to search for the Canavan gene. Hypotonia evolves into spasticity and assistance with feeding becomes necessary.
Life expectancy is usually into the teens.
The initial collaboration between Matalon and the Greenbergs was beneficial both to the other affected families, as well as the scientific community at large. A registry of families with Canavan was established which helped recruit tissue donors. The gene was eventually found six years later in 1993 and Matalon then was able to develop a genetic test for Canavan disease. Then, in 1998 MCH began licensing their gene test that has the power to identify Canavan mutations. The main issue that is the basis for the suit is the way in which MCH has chosen to use the tissue samples to develop a commercial test that it has then enforced a licensing fee upon.