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. Author manuscript; available in PMC: 2011 Apr 1.
Published in final edited form as: Genet Med. 2010 Apr;12(4 Suppl):S5–S14. doi: 10.1097/GIM.0b013e3181d5a669
Patents and Licensing Events Technical and Professional Events
1971 – Drs. John O’Brien and Shintaro Okada develop first enzyme test for Tay-Sachs disease
1990 – Dr. Matalon publishes details of prenatal enzymatic screening test for Canavan Disease
1993 – Dr. Matalon and others publish sequence of normal and mutated aspartoacylase gene, allowing for DNA-based Canavan testing
1997 – US Patent 5,679,635 issues, claiming methods of screening for Canavan disease 1995 – American College of Obstetricians and Gynecologists (ACOG) recommend DNA-based carrier screening for Tay-Sachs disease before pregnancy if both parents of Ashkenazi Jewish, French-Canadian, or Cajun descent
1998 – 1999 – Miami Children’s Hospital (MCH) sends enforcement letters to hospitals and laboratories testing for Canavan disease 1998 – ACOG recommends DNA-based carrier screening for Canavan disease if both parents are of Ashkenazi-Jewish descent and prenatal, DNA-based diagnostic if both parents are carriers
January 20, 2000 – Canavan Disease Screening Consortium and Canavan disease experts meet with MCH to discuss licensing patents 1998 – American College of Medical Genetics (ACMG) recommends that people of Ashkenazi Jewish descent be offered DNA-based carrier screening for Canavan disease prior to pregnancy and that DNA-based screening for Canavan disease and Tay-Sachs disease be combined because both diseases are common among Ashkenazi Jews
October 2000 – After MCH fails to find single, large-volume licensee for Canavan testing and only discloses information about 4 of 12 licensees to Canavan Disease Screening Consortium, patient advocacy groups and families with Canavan disease sue MCH, MCH Research Hospital, and Dr. Reuben Matalon (Greenberg v. Miami Children’s Hospital)
August 3, 2003 – Greenberg v. Miami Children’s Hospital is settled out of court on confidential terms