Bruneau & Wodell report on the first comprehensive investigation into the dispute involving Dr. Nancy Olivieri, Apotex, the Hospital for Sick Children & the University of Toronto. The case involves issues of research ethics & academic freedom so important to the public interest that it has attracted national & international attention.

The continuing scandal of Dr. Nancy Olivieri versus Apotex etc. was first reported in these pages in September 1998. More than three years later, the Report of the Committee of Inquiry on the Case Involving Dr. Nancy Olivieri, the Hospital for Sick Children, the University of Toronto and Apotex Inc. has appeared, taking the story back to its very beginnings.

It's a sequence of events that almost begs for Hollywood exaggeration.

One imagines Julia Roberts in the role of a scientist, banned from her experimental medical work with desperately sick children. Weeping in her immaculate green scrubs, Julia is comforted by a male colleague (Mel Gibson?) — who next day finds his e-mail service cut off and his office relocated to a broom closet.

Meanwhile, a courageous private investigator (Sigourney Weaver?) shouts "Gotcha!" as DNA evidence unmasks the fiend behind the anonymous hate mail harassment ... and a boardroom of corporate suits (led by Michael Douglas?) plot a disinformation campaign to convince the world that Julia is a few magnums of champagne short of a ministerial lunch. Only last-minute interventions by the top men in the field from Oxford (Nigel Hawthorne?) and Harvard (Robert Redford?) save our heroine from the rubber room.

Unfortunately the story isn't funny, because it really happened to a remarkable woman scientist, and to young people coping with the congenital and usually fatal blood disease thalassemia.

It is to the credit of the three-person committee behind the report that all the melodrama happens between the lines. Bending over backwards to be fair (a posture that makes access to the keyboard difficult and may account for some inelegant prose) and under considerable legal duress — a cheeky appendix consists entirely of letters from various notables threatening to sue for libel — the trio pursues a paper trail of bungled reports, bureaucratic ineptness and questionable science.

None of the parties to this decade-long and still-unresolved scandal emerges unscathed — not the Hospital for Sick Children, nor the University of Toronto, nor the CBC, nor Health Canada. Even the commissioning agent behind the inquiry, CAUT, is politely but firmly raked over the coals for taking too long to do the right thing.

So what happened?

A huge research and teaching establishment, The University of Toronto aims to be at the leading edge of scientific and cultural discovery. It costs a lot to run research and teaching programmes in dozens of fields and to stay at the edge in all of them.

Medicine is especially expensive, but it's a flagship in any university that can afford labs and teaching hospitals. The public are fond of university-based medical research, since it is supposed to be free of profiteering self-interest. Thus the U of T strongly, and rightly, supports its medical research establishment.

But, after 30 years of cuts in public funding, the search for funds has become desperate and those cuts have now produced an unpleasant harvest.

Toronto's Hospital for Sick Children, an integral part of the university system, was home to the research of Dr. Nancy Olivieri for years. Pharmaceutical giant Apotex Inc. offered Dr. Olivieri and HSC a sizeable grant to underwrite her research on blood disease. Thalassemia affects young people, and it's picky. Most victims live in poor countries of the world. In commercial terms, they are a vast and untapped market.

Researchers hoped a new medication could help these sick children lead more normal lives. Apotex, hoping to patent and manufacture the drug, said it would provide money to keep Dr. Olivieri in her lab, and to keep HSC and the University of Toronto in the research business.

Meanwhile, back at the ranch, Apotex was negotiating a multimillion-dollar donation towards a new U of T biomedical research centre. U of T must have salivated at the idea of Apotex funds rolling in, first for the Olivieri lab, and second for a whole new research institute.

But in 1996, after seeing results from animal tests, Dr. Olivieri found serious potential drawbacks in long-term administration of the experimental Apotex drug. She decided her patients and their families had a right to know about this new risk. And because she is a fine scientist, she had no trouble persuading a good journal to put her tentative conclusions before the scientific public.

That's when the excreta hit the ventilation system.

One of the research contracts with Apotex included a confidentiality clause that gave the company control over communication of any data from the drug trials for one year after completion of the trials. But there was no confidentiality clause for the research trials in which Dr. Olivieri discovered the risks she felt essential to report. Apotex immediately terminated the trials and threatened legal action against Dr. Olivieri. Negotiations over the huge Apotex donation were suspended. Rather than defending Dr. Olivieri, the hospital executive committee publicized Apotex criticisms of the quality of her scientific work.

Vicious anonymous letters attacked Dr. Olivieri and those who supported her. An internal HSC review found against Dr. Olivieri, and she was removed from her administrative position. Her colleagues complained the hospital was punishing them as well. Another review, which refused Dr. Olivieri access to charges made against her or any opportunity to defend herself, was abruptly terminated when her lawyers protested, and the accusations against her were made public in a particularly damaging way.

With bulldog determination and saintly patience, the committee of inquiry has dug its way through warehouses of documents (the report has more than 1,400 detailed end notes). It found false and malicious information that misled earlier reviews. It shows how institutions honour-bound to protect Dr. Olivieri's academic freedom and legal rights, failed her at every step of the way (not to mention her young patients).

It is hard to resist two conclusions.

First, the U of T administration wanted to keep Apotex happy, even if that meant looking the other way as Apotex tried to muzzle Dr. Olivieri, and even if it meant ignoring a concerted attack on her academic freedom.

Second, like any other business, Apotex wants to market its products. Trouble is, Apotex is heavily involved in research, and research should be free of market pressures and political pressures, if it is to be any good.

This is a case where greed could have caused scientific research done under contract to go terribly wrong. Apotex is a business, not a university, so greed makes sense. Trouble is, greed can be very bad for our health.

Still more worrisome is the wrong-headed response of the U of T administration. University administrations are not supposed to be motivated by greed. They are supposed to be strong protectors of academic freedom and agents of the public interest in scientific and humanistic research.

If you believe that medical experimentation in Canada is strictly monitored by competent review ethics boards, or if you're confident academic freedom is protected in Canadian universities and their affiliated hospitals or if you know a small child with a serious illness, then you should be very afraid.

This report should give you a sleepless night or two ... and prompt you to call your MP this very day.

Bill Bruneau teaches at UBC and is a past president of CAUT. Russell Wodell is a Vancouver writer and editor.

The views expressed are those of the authors and not necessarily those of CAUT.