Blood, MOOCs and Money: In the late 90s, a titillating story started making the rounds in Toronto. Its focus was a series of poison-pen letters authored by a pharmacology professor at U of T. They had been sent to research physicians at the Hospital for Sick Children and in them he skewered one of their colleagues, a hematologist under his administration. The professor’s perfidy had been discovered through DNA analysis: to stop suspecting one another, recipients of the letters had contributed to a pool and paid for the test themselves.
The hematologist in question was an attractive blonde and her competence and character were being questioned by the hospital and the university. Their doubts were fuelled by a troubling association they had with a large drug company. This drug company had promised the university an endowment of 25 million dollars, but as events unfolded it became clear the donation was contingent on how well they managed their rogue specialist. She was Dr. Nancy Olivieri and the drug company was Apotex. John LeCarre wrote a fictionalized account inspired by these events, an account that would go on to become the film The Constant Gardener.
I followed the story with interest. Apart from the operatic plot, the University of Toronto was my alma mater, I had done clerical work in many of their associated hospitals, and I felt some fealty, in particular, for the HSC. As a child I’d been sent there for a difficult-to-diagnose problem; I was curious about why the hospital was distancing itself from one of its own researchers.
I’ve been writing about MOOCs lately, those massive open online courses being touted as just-the-thing to save cash-strapped universities. From pedagogical and ethical perspectives, their value as for-credit courses is questionable. Nevertheless, MOOCs as such are being vigorously promoted by professors backed by venture capitalists — well-oiled consortiums that have a lot in common with drug companies, or “big pharma,” as it’s often called. Despite friendly advertorials, these are organizations that have little interest in the well-being of clients or students. And as Olivieri’s story makes clear, their ability to silence dissent is a matter for concern.
Her story starts like this: she is a specialist in blood disorders and in 1996 was testing a drug, Deferiprone, to judge its efficacy. The drug treats thalassemia major, a potentially fatal version of an inherited blood disease (much like anemia) that requires sufferers to have life-long blood transfusions. A side-effect of this treatment is iron overload, a problem that can lead to toxic levels forming in patients’ organs. Deferiprone is a chelator: when administered, iron binds with it, allowing the iron to be excreted from the body.
Questions about its efficacy were first raised in mid-1996. By February 1997, Olivieri and another researcher, Dr. Gary Brittenham (now of Columbia University), determined it was actually toxic to patients. The belief was it could cause liver and heart damage over time. However, legal problems ensued when Olivieri tried to notify patient-participants involved in the study. Apotex abruptly ended their agreement with her and the university and pulled all supplies of the drug from the HSC. They then threatened Olivieri with “all legal remedies” should she inform anyone, including participants, of her findings.
Olivieri had signed a confidentiality agreement that emboldened Apotex to make the threat. However, their legal position was untenable under Canadian law. Physicians in Dr. Olivieri’s position are legally bound to inform patients of the risks of clinical trials. In fact, ignoring their safety could have landed Olivieri in more serious legal difficulty and so she made her concerns known to those affected: patient-participants, the HSC and the University of Toronto, where she held an academic appointment. Commonsense and the law were clearly on her side.
So why did complications arise? Procedural protocols for joint corporate and university endeavours were weakly articulated; forays made by the corporate world into the academic one, up until that point, had been relatively uncharted and informal. In the case of Deferiprone testing, provisional protocols hadn’t been drafted because humanitarian conflicts had not been anticipated. Olivieri had in fact been an enthusiastic proponent of the drug until her testing changed her mind. Outside of this conflict, however, and in the academic world generally, a subtle disquiet was developing over this type of collaboration. Three academics who wrote in support of Olivieri suggested that political forces, south of the border, were key:
In the early 1970s several American foundations undertook a massive, sustained propaganda campaign to discredit the liberal social programs introduced in the 1960s and the political economy that gave rise to them…neo-conservative governments began reducing taxes (mainly for the wealthy) and in the USA especially, increasing military expenditures (mainly benefitting corporations). These actions helped drive up government deficits, which in turn led to cuts in government spending on public services, privatizing of state resources, weakening of government health and environmental regulatory agencies and deregulation in the private sector.
With declines in public funding, hospitals established in the 50s and 60s became increasingly difficult to support. In 1980 the Bayh-Doyle Act was passed by the American Congress and this allowed universities and hospitals to patent results of government-funded research, and “derive income from research.” Around that time, governments in both Canada and the USA began to offer financial incentives for university-industry partnerships. This meant “universities became more dependent on corporate donations for infrastructure, scholarships and even salaries for some prominent faculty.”
The authors of the report – Drs. Jon Thompson, Patricia A. Baird and Jocelyn Downie – rightfully note further troubling developments. The importation of business practices into health care gave birth to another industry: the promotion of treatments and drugs that resulted in the “human condition itself becom[ing] medicalized.” Their report was written in 2005 and I would argue that since then the medicalizing of the ordinary has fed into an ascendant paradigm of self-improvement, one which has crept into all corners of life. To use an analogy, the wish to become perfect has made it fashionable to make oneself, or one’s home or spouse, “over.” This has found its corollary in an entrepreneurial drive to reclaim and change the space inside existing market structures. This model can be seen in MOOC start-ups like Coursera and other businesses like Airbnb and TaskRabbit.
These are companies that specifically rely on existing structures to create parasitical business models. Like big pharma, which convinces us we need to change our biology, online educators like Coursera are also seeking to excavate from within. They propose using existing university brands and credentials – publicly and tax supported structures in other words — for their own business ends.
Airbnb is doing the same. Using hip terms like “the sharing economy” and “collaborative consumption,” they are also excavating the bed and breakfast business internally. They provide a platform where tenants can illegally re-rent space they don’t own and put their guests, neighbours and bank accounts at risk. Their marketing “logic” is that one is beating the system — the big hotel chains — by using them, but in fact they compete more directly with licensed B and B hosts, who are typically small business owners. TaskRabbit applies this same model to a disenfranchised labour force. For them, excavation means the cost of overhead, taxes and health insurance – what used to be the benefits of working for a company — are now passed down to piece-work labourers desperate for what the right euphemistically calls the “right to work.”
Nancy Olivieri’s experience with Apotex is informative in that it exposes monetary rewards used by pharamceutical companies to assert control over physicians. With MOOCs and educational technology, the rewards are different. Instead of opulent meals and free trips to pharma-sponsored conferences, academics are being wooed with more of the currency specific to academe: prestige in the form of fame and recognition. This movement towards a star-system of professors is obvious and deliberate. In her TED video, Daphne Koller extols the virtues of going up-market: “So we formed Coursera, whose goal is to take the best courses from the best instructors at the best universities and provide it to everyone around the world for free.” This brazen appeal to vanity has not been lost on critics: Susan Amussen of the University of California and Allyson Poska of the University of Mary Washington made the following observations after attending a panel on MOOCs. The panel was held at the Annual Meeting of the American Council of Learned Societies:
Now, it is true that the most “prominent” scholars tend to teach at the most “prominent” universities, but the skills of teaching are widely distributed – and the difficult job market of the last thirty years has ensured that there are outstanding scholars at many colleges and universities around the country. Indeed, those who teach students who arrive at college or university with less preparation have often spent more time honing their pedagogical skills in order to engage their students and address the challenges that their diverse backgrounds, socio-economic levels, and intellectual strengths present.
The divide-and-conquer message coming from commercial MOOC purveyors is clear: If you are asked to participate in one it’s because you are one of the winners, one of the best. It’s a clever strategy: a superlative need to excel is being used against the very people who embody excellence. Only the most narcissistic among us would miss that and miss that MOOCs aren’t good for the entirety of academe. These are blind spots the founders of Coursera, Udacity and edX are counting on.
The Olivieri case also brought to light the extent of the influence the corporate world had on medicine. In Canada, that crisis prompted those in the field to develop rules, laws and other strategies to maintain academic freedom. Gone are ghost-written journal articles and credit for experiments some professors may have only had a slight acquaintance with. The CAUT (Canadian Association of University Teachers) commissioned a report by a task force of senior scientists from across Canada that looked into protecting their independence and freedom. As a result, they have helped clinical scientists to protect their rights in medical school and to organize effective faculty associations. They have also worked to strengthen the independence of regulatory agencies, many of which they believe had been captured by pharmaceutical companies and had come to see corporations, and not the public, as their clients. Lastly, they extended their focus internationally, with a view to preventing the abuse of those living in developing countries. The CAUT felt that with greater regulation in the developed world, pharmaceutical companies might take their experiments to places with minimal government oversight.
There is bit of dialogue from Shakespeare in Love that I’ve always liked. The character of Richard Burbage hands his theatre, The Curtain, over to Shakespeare and his Admiral’s Men when the Master of the Revels shuts down their theatre, The Rose. It’s a moment when the actors unite against the tyranny of the time in a show of courage and solidarity:
The Master of the
Revels despises us for vagrants,
tinkers, and peddlers of bombast. But
my father, James Burbage, had the
first licence to make a company of
players from Her Majesty, and he drew
from poets the literature of the age.
Their fame will be our fame. So let
them all know, we are men of parts.
Inside Higher Education reported last week that a group of professors at Harvard had joined forces and asked to have a committee formed to create “a set of ethical and educational principles” for edX. Their efforts went largely unheeded, with a spokesman from the university issuing a statement in response. The IHE article states that “while polite about the faculty letter [the spokesman] suggested that the administration does not intend to create the faculty committee the professors want.”
Perhaps we should take our cue from Nancy Olivieri, her supporters and the CAUT and insist that academic rights and freedoms be protected. Perhaps we could disrupt the disrupters by urging our institutions to stop paying huge licensing fees to companies like Microsoft, particularly when its founder, Bill Gates, seems determined to remake education in his own image, to turn the university experience into one long training session. Perhaps we can explain to companies like Microsoft, Apple and Adobe that by using their software we are creating future customers for them and so charging us a lot of money to do so doesn’t make sense: we should be getting their products for free. And if they don’t agree, perhaps we should consider moving entirely to open source software that won’t cost our institutions anything. If a free and effective software doesn’t exist, we can make space in our institutions to create it. After all, creating spaces for things to grow is something we in higher ed are good at.
Commercial versions of MOOCs are a threat because companies like Coursera, Udacity and edX are parasitical and are moving quickly to install themselves in our institutions. The response from the administration at Harvard, in light of that, is disappointing. At the very least, slowing the process of incorporating MOOCs will give us all a chance to carefully weigh the pros and cons of having them or of developing them into versions that make the best and not the worst use of our human resources. It’s too bad Harvard lost an opportunity to show leadership in that regard.
Even after she was vindicated, the controversy over Nancy Olivieri’s stand against Apotex raged on. As late as 2005 a book detailing the affair, The Drug Trial, vilified her and her role in the controversy. As critics were quick to point out, however, the book’s launch coincided with Novartis’ launch of a drug very similar to Deferiprone.
So what is important here? Taking Olivieri’s battle as an example, we are left with two choices when it comes to corporate interference. We can give up or we can follow her lead: her words about big pharma, in many respects, apply to us too.
How can this sorry situation be repaired? [H]ow can we put in place safeguards so this does not happen again? First universities must recognize that drug companies need them and the patients at the clinical institutions much more than the other way around. University administration must level the playing field [and] this present moment is the time to bring in regulations with bite. Drug companies must be told the simple facts of life…they, too, have to follow the rules.
We can also look to Marshall McLuhen for answers: If the medium is the message, then the package, when it comes to MOOCs, is imperfect. Perhaps it’s time for us to help our institutions find better ways to save money.
If you like this post, please share it on social media and/or make a comment below. My site is designed to offer an alternative to the mainstream media: adding your voice may help journalists and politicians of all stripes remember what common sense looks like. Feel free to comment anonymously.