Children's parents sue hospital over genetics patent

Families of children suffering a degenerative brain disease are suing the hospital and researchers who used their children's blood and tissue to identify and patent the gene responsible for the disorder.

John Borchardt
Nov 21, 2000

HOUSTON Families of children who died of Canavan disease, a rare degenerative brain disease, are suing the hospital and researchers who used their children's blood and tissue to identify and patent the gene responsible for the disorder. The six-count lawsuit filed on October 30 is believed to be the first of its kind. It alleges breach of informed consent, breach of fiduciary duty, unjust enrichment, fraudulent concealment and misappropriation of trade secrets.

Canavan disease most commonly afflicts children of Jewish families whose ancestors came from eastern and central Europe. There are about 200 children in the US with Canavan disease. Symptoms usually appear when babies are 3–6 months old. Patients are never able to walk or eat independently. As the disease progresses, children often lose most of their sight and are prone to seizures and infection. They develop difficulty chewing and swallowing; most eventually require intravenous feeding. Children become less...

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