My experience in a struggle involving the rights of patients, research ethics and academic freedom led me to consider joining Science for Peace. At the University of Toronto, surprisingly few scientists had the courage to assist in a very public recent struggle — the Olivieri-Sick Kids Hospital-University of Toronto controversy. To repeat a memorable line up front: accounts of this saga have “multiplied and divided to the point where they would now over-fill the shelves of a reasonably sized library”1.
When a scientist asked me, only last week, “You didn’t feel alone during all this, did you? You must have recognized that you had a lot of silent support,” I was not very accommodating in my reply. How was it that some of the most thoughtful minds in Canada did not attempt to advocate for the principles of research ethics, academic freedom, and the protection of patients in clinical trials, over the nine years this saga has played out? The answer is that there were many powerful forces opposing us — including a powerful drug company with University of Toronto links, two successive Presidents and two successive Deans of Medicine (one of whom is now the University’s President), and the Boards and Administrations of the formerly highly prestigious University-affiliated children’s hospital — and that, as I have heard the explanation many times, perhaps many of U of T’s scientists just found it more comfortable to be “neutral”.
Neutrality is valueless. Silent support means nothing. That is, in part, why I would like to see Science for Peace continue, and expand its mandate as a voice to challenge the inappropriate influences of commerce in this university.
The story is this: In 1995, I came to believe, based on scientifically credible preliminary evidence, that the drug administered in a clinical trial I had conducted (using public funding) since 1989, might cause harm to some patients, for whom another safe licensed drug was (and remains) available. As a physician, I was duty-bound to disclose my concerns about this experimental drug. When I made clear my plan to disclose these concerns, the sponsoring drug company threatened “all legal remedies” should I do so, and abruptly terminated the clinical trials. Those legal warnings were issued on the basis of a “confidentiality” clause in a research contract, co-signed by Sick Kids’ Associate Director of Research, three years previously. I fulfilled my ethical obligations, despite the legal warnings. The Hospital for Sick Children and the University of Toronto “did not provide effective support either for my rights, or for the principles of research and clinical ethics, and of academic freedom, during the first two and a half years of this controversy. After the controversy became public in 1998, the University stated publicly that it had provided effective support for my academic freedom, but this was not true.”2 Instead, both the University and Hospital “took actions that were harmful to[my] interests and professional reputation, and disrupted[my] work”2. Then, it was discovered that the University of Toronto was negotiating a twenty million dollar donation from the drug company in question, with additional millions promised for the University’s affiliated hospitals. As a result, “some were led to speculate that the University’s failure to recognize and support[my] academic freedom might not have been unconnected to its eagerness to secure financial support for its proposed Molecular Medicine Building project”1. When it was then revealed that the University’s president Robert Pritchard had lobbied the Government of Canada (through a private letter to the Prime Minister) on behalf of the same drug company, “the lengths to which the University was prepared to go in appeasing a company’s interests were revealed”1.
Not the least of these lengths were the lawsuits. Financial ruin is usually a large part of such a battle, and this was true in my case — estimates of my legal expenses easily exceeded a million dollars. I was required to defend against threats of legal action and an expensive “countersuit” from the drug company after I issued libel proceedings for public defamation. However, the most unexpected source of legal action against my colleagues and me arrived in a lawsuit from the Deans of Toronto’s Faculty of Medicine (Dr. David Naylor, Dean from 1999-2005 and now president of U of T; and Dr Arnold Aberman, Dean from 1992-1999) in 2002.0 The Deans sued us after the posting, on the website of our organization Doctors for Research Integrity, of a Toronto Star article critical of them. While legal action is often the only available approach to a controversy, justice might be seen to be somewhat imbalanced if one side must seek their own funding to defend a lawsuit brought by bureaucrats of powerful public institutions.
Almost as soon after this scandal reached the press, a now infamous document called the “Naimark Report” was financed by Sick Kids. Authors Arnold Naimark, Bartha Knoppers and Fred Lowy took several hundred pages to document its claim that if anyone was at fault in this sorry tale, it was Dr. Nancy Olivieri, but directed no criticism towards Sick Kids or the University for their failure effectively to support my academic freedom3. Although “significant parts of the testimony on which Naimark et al. based their findings were later shown to be incorrect, before the historical record was authoritatively established, I was charged with ‘professional misconduct’ and ‘research misconduct’ and referred, amidst great publicity, first to the Medical Advisory Committee of Sick Kids, and subsequently to the College of Physicians and Surgeons of Ontario”1. When the College ruled that my conduct had been “exemplary” — finally reached in 2002, “six years after the conflict became a national and international cause célèbre”1.
If you don’t want to read the 500-page Olivieri Report2, you might want to read another one: The Constant Gardener (2001, Penguin Press), now a successful movie, which details — fictionally, of course — activities of some pharmaceutical companies4 and in which John Le Carre describes a Canadian doctor and clinical researcher, who raises concerns about a drug intended for use in emerging countries. She is threatened by a drug company, her scientific data is appropriated without permission and misused in the licensing of a drug, and anonymous hate mail is sent to her by a senior colleague — all of course, total fiction! (Anonymous hate mail sent to my colleagues and me in 1998-9 urged us to “stop poisoning the air and fabric” of “decent people” at Sick Kids’. The author, Dr Gideon Koren, was uncovered after months of denial during which he blamed others, through DNA left on a licked stamp5. A second anonymous letter was also later traced to another senior Sick Kids’ scientist Sergio Grinstein, again through DNA left on a stamp6. Le Carre describes the sending of anonymous hate mail to a researcher at a Canadian university, urging her to stop “poisoning decent people’s lives”. Its author is identified through DNA on a licked stamp). Fiction? You decide.
Another story: in a way, a most revealing one. In March 2005, I accepted a last-minute invitation to the Joint Centre for Bioethics (JCB) at the University of Toronto. As everyone in the field of ethics now knows7, the Joint Centre for Bioethics was silent throughout the entire Olivieri/Hospital for Sick Children/U of T scandal. While this “ethical struggle of international proportion[called out] for someone to take a principled stand in the face of serious wrong, in order to protect the interests of research participants and the integrity of the research process” there was, instead (with the exception of Professor Schafer) “deafening silence from the Canadian bioethics community”. Only nine years later, I was asked to come and speak to the Joint Centre for Bioethics. I sought to discuss the Joint Centre for Bioethics’ silence with an individual who had not been at the center at the time, who explained that the JCB policy was that “they simply didn’t take a stand on such matters” (at the time, we were discussing academic freedom, the protection of patients in clinical trials and scientific integrity). I asked him if the Joint Centre for Bioethics at U of T would take a stand on, say, the practice of torture? He thought for a minute — and said no.
Whatever the reason for this “policy,” if this is true, I believe it’s living a lie to pretend that doing nothing, that not taking a stand, means you are not violating all the scientific and moral and ethical principles we allegedly stand by. I think that those who believe that this is appropriate are living an ethical joke. I don’t want our scientific community to be an ethical joke. I believe that we can do more; we do not have to remain neutral.
I don’t know another issue so central to our common interests as the pursuit of truth that may yield results that are not immediately, or perhaps not ever, commercially exploitable. There is a growing threat to scientific integrity in this country — that threat being the increasing reliance of publicly funded universities and our academic hospitals on corporate money and the inappropriate. Perhaps alone in our society, the university is a place where areas of study not for sale can be examined. We know that commerce has another agenda — that damages academic science. Science must be open and freely exchanged — not secretive, directed, and economically driven8,9,10,11,12,13.
Science for Peace wishes to explore solutions to these and other problems. In the areas of Biotechnology and Genetic Engineering, one of our goals is to obtain extensive authoritative research, and produce materials for both public education and information to governments. For example, it has become known that Canada, in tandem with the Multinational corporation, Monsanto, has been promoting “terminator seed” technology. A world-wide moratorium on this technology was agreed to at the UN but, recently in Bangkok, Canada spearheaded an attempt to allow the introduction of these seeds, which prevent farmers from saving their seeds for next year’s crop, producing total dependence on agricultural giants. Furthermore, International Monetary Fund (IMF)/World Bank loans in agriculture stipulate that recipient countries are required to use genetically modified seeds and plants. Thus, the combination of World Trade Organization rules with these loan restrictions will generate a monopoly on the world’s food-producing capacity in the hands of Multinationals. Many Science for Peace members, including Ed Daniel, are researching these developments and preparing materials for public dissemination.
Another project, again with the goal to obtain extensive authoritative research and produce materials for both public education and information to governments. This project is run by John Valleau, Jean Smith and Paul Hamel and concerns Peace in Outer Space. Those scientists write: “We are trying to prevent Canada’s participation in the U.S Ballistic Missile Defence system. Indeed, the work this team produced so far, has already been sent to Parliament and posted by Carolyn Bennett on her web site. This team is continuing to conduct its research with respect to Canada’s integration with the US military, and the impact on Canadian Foreign Policy, and Canadian Sovereignty. The intention here is to continue to produce a series of papers in this area, and possibly to fashion a book.”
We propose to examine all sources of funding to a number of large research departments at Canadian universities from 1995 to 2004 with the aim of determining the relative proportion of funding provided by industry, including so-called “matched funding”: so called “public” funding which is in fact dependent upon support by industry. We propose to examine the publications arising from these departments over the same ten years, to evaluate, if and to what extent the publications may be showing heightened “sensitivity” to industry interests.
Of course, we need to educate and support the scientific community not only in the highest standards of research, but in the exercise of courage in the fight against those who harbour undeserved privilege and who abuse the ideals of science. In the struggle outlined above, most of the scientific community said and did nothing, remained “neutral.” Ultimately, such neutrality will erode public trust in science.
This is adapted from a recent speech given by Nancy Olivieri, President of Science for Peace.
0 Notice of Libel against Drs. Olivieri, Durie, Chan, Dick, Gallie, Thompson, Kaufman, Ranalli, Schafer, Brill-Edwards and Mr. Marc Giacomelli served May 13, 2002 by Drs. David Naylor and Arnold Aberrman. ^
Notes
1 Schafer A. Biomedical conflicts of interest: a defence of the sequestration thesis-learning from the cases of Nancy Olivieri and David Healy. The Olivieri Symposium. J Med Ethics 2004;30:8-24 ^
2 Thompson J, Baird P, Downie J. 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. Lorimer Press, 2001 ^
3 Naimark A, Knoppers BM, Lowry FH. “Clinical trials of L1 at The Hospital for Sick Children: a review of the facts and circumstances,” released December 9, 1998 ^
4 Le Carré J. The Constant Gardener. Penguin Press, 2001 ^
5 Bonetta L. Hate-mail author trapped by DNA Nature Med 2000; 6: 364 ^
6 Birmingham K. Second Hospital for Sick Children researcher sends anonymous ‘Olivieri’ note. Nature Med 2000; 6 (5): 485 ^
7 Baylis F The Olivieri debacle: where were the heroes of bioethics? J Med Ethics 2004; 30: 44-9 ^
8 Angell M. The Truth about the Drug Companies: How They Deceive Us, And What to do About It. Random House, 2004 ^
9 Kassirer J. On The Take: How Medicine’s Complicity with Big Business Can Endanger Your Health. OUP, 2004 ^
10 Krimsky S. Science in the Private Interest. Rowman and Littlefield, 2004 ^
11 Washburn J. University Inc. Basic Books, 2005 ^
12 Bok D. Universities in the Marketplace. Princeton University Press, 2003 ^
13 Nathan DG, Weatherall DJ. Academic freedom in clinical research. N Engl J Med 2002; 347:1368-70. ^
Comments