A review published in Scientia Canadensis, volume 31, numbers 1-2, 2008, pp. 217-220.
Disputes in science are invariably more complex than they appear on the surface. Talk to a whistleblower and you may be regaled with hours of "I did this, they did that," accompanied by piles of documents, so before long your head is reeling from the twists and turns. This applies to local disputes that involve only a few people; when cases receive media attention, another layer of complexity is added.
In my experience with numerous disputes over the years, the protagonists span the full gamut of human types. A very few are paragons: truthful, hard-working, generous, polite, balanced and public-spirited. But others display common human traits such as anger, envy, ambition and spite.
Complexities and human failings get in the way of simple narratives such as "fearless whistleblower challenges company" or "troublesome employee disrupts operations." Observers often latch onto the narrative that makes most sense to them, sometimes taking their cue from media stories.
Nancy Olivieri, a doctor at the Hospital for Sick Children in Toronto, was the key figure in a long-running dispute over efficacy of drugs, treatment of patients and drug company funding and control, among other issues. To her supporters, she was a brave whistleblower; to her detractors, she was biased, vexatious and obstinate.
Shuchman attempts to go beyond the polarised stereotypes in this saga. She provides a rich narrative, quite an accomplishment given the complexities involved, both in science and in plot. Furthermore, numerous legal threats and actions were issued from both sides in the dispute, making many sources reluctant to comment.
The scientific side to the story centres around thalassemia, an inherited blood disorder. Sufferers require frequent transfusions, with the side effect of accumulating dangerous levels of iron in the body. Drugs are needed to help get rid of the iron, but the standard drug, Desferal, requires long-duration injections that are extremely unpleasant.
Olivieri studied an alternative drug, L1, developing an international reputation for her contributions. She obtained funding from Apotex, a large Canadian pharmaceutical company. But then - according to the dominant narrative - Olivieri discovered serious problems with L1, and Apotex threatened her with legal action should she speak out about them. She was eventually able to expose the dangers: a courageous whistleblower who, with the help of allies and the media, won against a greedy corporation.
Shuchman aims to show there is much more to the story. To do this, she interviewed everyone possible and used documents to back up her findings. She has written the book as a continuous story, weaving the various strands together, mostly chronologically.
Keeping track of the numerous personalities involved and the scientific, clinical and organisational zigzags would be a challenge for any author. Shuchman does an excellent job, though following it all requires concentration. As the book proceeds, the various strands of plot come together with quickening pace, almost like a novel.
Shuchman's investigation reveals a side to the story that has not received so much public attention. She tells of how Olivieri bullied medical residents and patients, and how she began collaborations and then dumped her collaborators - without telling them - and proceeded with the work on her own. She tells how Olivieri's story of being silenced by Apotex was a gloss on a more complex sequence: Olivieri had earlier been a prominent advocate of L1, and only turned fully against the drug after conflict with Apotex. Olivieri comes across as someone who was both charismatic yet difficult to work with, someone for whom others were either allies or enemies.
The story can be read in various ways: as the personal story of a scientific prima donna, as the inside story of the operations of a hierarchical, dysfunctional organisation (the Hospital for Sick Children) or as an exemplary story about scientific and medical ethics.
Personally, I found it fascinating to notice the tactics used by the different players, including building alliances, publishing papers, using legal threats and actions, mounting attacks at a scientific conference, granting or denying funds or access to patients, appointing staff and using the media. A one-sided narrative would focus on Apotex's use of its financial power to influence hospital and university administrators, countered by brilliant use of the media by Olivieri and her supporters. Shuchman tells also of attacks made by Olivieri, including allegations of misconduct and legal actions against colleagues and the media.
Shuchman finishes the book with an account of what subsequently happened to the main players - the scientists - and to thalassemia patients. But she makes no attempt to sum up the lessons of the struggle or to assess the story in the light of research ethics, patient welfare or organisational reform. She does not introduce an explicit framework, such as any of those used by scientific controversy scholars, for understanding the events.
The book's weaknesses lie mainly in what is not addressed. There are no comparisons with other controversies, and therefore no easy way to judge the significance of the issues. Shuchman does not say what issues or principles are most important. Access to drugs? Scientific independence from vested interests? Loyalty to patients? Free speech?
It is routine for whistleblowers to be smeared. Whistleblower groups often say that managers should examine the claims made, not the person who makes them. Shuchman does not offer sufficient justification for giving so much attention to Olivieri's personal behaviour. Is Olivieri all that different from other whistleblowers, or from high-performing scientists generally? And what difference should it make that Olivieri is less than perfect? Shuchman gives no guidance.
Likewise, Shuchman reports actions by Apotex, including shutting down drug trials and threatening legal action, without much context. What is appropriate behaviour for drug companies? What should be done about behaviours judged inappropriate? Shuchman seldom enters this sort of territory. The result is an account that tells a lot about individuals and actions but sheds little light on bigger questions.
University of Wollongong