In 1998, Dr. Nancy Olivieri broke her confidentiality agreement with drug manufacturer Apotex and informed patients participating in a clinical drug trial of its potentially life-threatening side effects, kicking off an extended debate over research ethics and academic freedom.

While she initially saw negative repercussions from her hospital and U of T, Olivieri has now received the 2009 Scientific Freedom and Responsibility Award from the American Association for the Advancement of Science.

AAAS is the publisher of the prestigious Science journal. The award selection committee praised Olivieri “for her indefatigable determination that patient safety and research integrity come before institutional and commercial interests.”

Olivieri was studying deferiprone, a pill designed to treat thassalemia, a rare blood condition that drastically reduces a person’s life expectancy and makes them dependent on blood transfusions. She was taking the drug through clinical trial at the Hospital for Sick Children in the mid-1990s.

She went public in The New England Journal of Medicine in 1998, publishing her findings on dangerous side effects and limited effectiveness of the drug.

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Sick Kids Hospital removed Olivieri as director of one of its programs, demanded that she stop publicly discussing the issue, and openly questioned her actions. Apotex sued Olivieri, claiming she had breached her confidentiality agreement. U of T, at the time negotiating a $30-million donation from Apotex to fund U of T and its teaching hospitals (including Sick Kids), publicly reprimanded Olivieri and, in her view, attempted to silence her findings.

After a flurry of lawsuits and countersuits, Olivieri settled with Apotex, Sick Kids, and U of T. She was awarded an undisclosed amount by the hospital and university, where she currently works.

U of T president David Naylor, who was dean of medicine in 2002, could not be reached for comment. Catherine Whiteside, the current dean of medicine, wrote in an email, “The Faculty of Medicine recognizes that an award from the AAAS is very prestigious. Professor Olivieri is a valued faculty member and we wish her success in all of her academic pursuits.”

Arielle Rochman, a second-year U of T medical student, said she was surprised at U of T’s conduct. “The ethics boards are supposed to be there to back you up,” Rochman said. “As a medical student, doing research, I do want to know that the ethics boards will back me up no matter what.”

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