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Broken Atlas

The Secret Life of Globalization
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The Drug Trial

The Drug Trial

Nancy Olivieri and the Science Scandal that Rocked the Hospital for Sick Children
edition:Paperback
also available: Hardcover
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Excerpt

Prologue

In August 1998, a story about a doctor named Nancy Olivieri grabbed headlines in Toronto. The articles stated that Olivieri had discovered serious problems with an experimental drug manufactured by Canada’s largest pharmaceutical company, a Toronto-based generics manufacturer called Apotex. The drug at the centre of the scandal is a white tablet called L1, or deferiprone, intended for use by patients with the inherited blood disorder thalassemia. Olivieri planned to tell patients about the problems, as required by her hospital. But Apotex played dirty pool, ejecting her from their research program, cancelling the study she was running to test the drug and threatening her with court action if she went public. The scandal was in the news for months. And for four years, legal charges and personal accusations flew back and forth between Olivieri, the company and Toronto’s Hospital for Sick Children, where Olivieri worked.

Parts of this story are well known. The CEO of the drug company Apotex is a billionaire alumnus of the University of Toronto, where Olivieri is a professor. At the same time that Apotex was funding Olivieri to test its drug on patients in a clinical trial, he was offering to put scores of millions toward university research facilities and teaching hospitals such as the Hospital for Sick Children, where Olivieri ran the treatment program for patients with thalassemia. The hospital and the university didn’t step in to defend Olivieri against the company’s threats when they arose. Determined to tell her patients and scientific colleagues about her discoveries, she became a whistleblower, publicly accusing Apotex of suppressing her discoveries. She also blamed her home institutions for allowing it to happen because they didn’t take up her cause. News of her plight shocked academics, and they sprang to her support. She has won medal after medal for courage.

In 1998, her hospital sponsored its inquiry to figure out what had happened; two years later, Canada’s national organization of university faculty associations conducted its own. But the inquirers lacked the power of the coroner or the courts: they couldn’t compel disclosure, ensure confidentiality or allow for appeals. John le Carré spoke to Olivieri and spun a fictional account of the events. Casting her as Lara from Leningrad, he wove her into The Constant Gardener, his recent novel about the human costs of Big Pharma’s corporate greed. Yet the full story of the science scandal that rocked Canada is not as convenient as fiction, and it turns out to be far more shadowy than le Carré imagined.

This is a complex story about medical research and the rules that govern it. Those rules are science’s moral code, the standards scientists live by and train under. Here are a few examples: "Don’t lie about your work." "Don’t steal someone else’s work and claim it’s your own." "Report your findings; don’t bury them." The rules should be easy to follow, but in the fiercely competitive world of modern medical science, they’re not.

In studies of new drugs, the research involves patients, so there are additional strictures: "Don’t ask patients to volunteer for an experiment that’s likely to harm them." "Report the serious side effects of an experimental drug." "Allow patients to drop out of an experiment at any time." The rules for research on humans are discussed in numerous places — the Belmont Report, the Declaration of Helsinki, the Nuremberg Code, National Institutes of Health (NIH) regulations, Food and Drug Administration (FDA) regulations, Canada’s Tri-Council guidelines. They’re supposed to be enforced locally by hospitals and universities, and if violations are widespread, federal authorities at the FDA, the NIH or Health Canada can get involved, even to the point of shutting down research at a university.

Yet the rules for doing science aren’t well understood, and newer rules about how to conduct research in an era of public-private partnership are still being hammered out, largely as a result of fiascos such as the one I am about to explore. The debacle of Nancy Olivieri and the pill to save thalassemia patients revealed every crack in the system. It is emblematic of what happens when the standards for scientists’ behaviour and the lines of institutional accountability are unclear.

The saga also unfolded against the background of an ongoing debate over drug research. Those who want greater protection from risky drugs point to innocent victims killed by dangerous prescriptions and lay those deaths at the feet of profiteering drug companies or unwitting drug agencies that approved products too quickly. On the other side, people with rare diseases for which few treatments are available demand the right to decide for themselves how much risk to bear, and urge drug agencies to speed the approval of products in the pipeline.

But at its core, this is a story of scientific rivalry and revenge. "Good scientists will tell you that being a good scientist requires a very competitive spirit in this day and age," said a sociologist of science, Harriet Zuckerman, in the mid-1980s, around the time that L1 was discovered. "It isn’t really clear what the causal relationship is. Maybe you have to be competitive in order to succeed, but maybe succeeding also helps you be competitive."

In the story of Nancy Olivieri and L1, highly successful scientists fought intensely for predominance over a tiny territory — the field of drug treatment for thalassemia. A pharmaceutical company got into the mix and the result was the scientific version of a Greek epic, with researchers battling over ideals, such as the well-being of patients and the integrity of their work, while simultaneously
competing against one another for power and position. At first, Olivieri was the epic’s heroine, telling the secrets of how her science had been thwarted by her enemies. The ferocity of the drug company’s retaliation caught and held our attention. The truth, however, remained obscured until much later, when others emerged to tell the rest of the tale, speaking mostly in whispers to one another. To disentangle a whistleblower’s moment from the legend that’s grown up around her, we’ll need to bring some of those other conversations into the open. Then we may begin to understand what happened here.

From the Hardcover edition.

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Hungover

Hungover

The Morning After and One Man's Quest for the Cure
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Capitalism and Classical Social Theory, Third Edition
Excerpt

Preface

 

Since the second edition of this book, we have witnessed seismic social-economic and political changes that have reverberated worldwide. For North America, the UK, and Europe, these changes seem to have engendered a sense of crisis—a sense of impending war, terrorist attacks, political turmoil with popular insurrections and riots, racism, xenophobia, and general foreboding as health provisions are commodified or scaled back. That’s not all. Technological acceleration has transformed our planet, our societies, and ourselves. The surfeit of well-documented reports link climate change to human activity and provide irrefutable evidence of an ecological crisis. The replacement of human labor power by robotic production and artificial-intelligence systems points to “jobless growth,” threatening the last vestiges of job security in manual and core professional occupations. Digital technologies are complicit in the transformational challenges we face today. It is possible for workers to be engaged, surveilled, and managed by text messages. Digital platforms harvest our personal tastes and preferences, which are sold to commercial advertisers and political lobbying groups. Data are the key resource of twenty-first-century capitalism—as crucial as coal, electricity, and oil in the nineteenth and twentieth centuries—creating global giants such as Amazon, Google, Facebook, and Apple (the first trillion-dollar corporation) with immense corporate power.

 

Have we experienced a period of crisis before? There have indeed been other dramatic years of rupture and uncertainty, such as 1926, when the British Trades Union Congress called a general strike that led the national government to mobilize the army; 1968, when police and the National Guard with fixed bayonets clashed with protestors against the Vietnam war on the streets of Chicago, and students and workers rioted on the streets of Paris; 1979, when the Berlin Wall came down; 1994, when elections in South Africa led to a coalition government, marking the official end of the apartheid system; 2008, when the global financial crisis, triggered by the collapse of Lehman Brothers, shook the world; and 2011, when we witnessed the pro-democracy revolts in North Africa and the Arab world, the short-lived anti-capitalist Occupy movement, and the environmental disaster caused by severe damage to the Fukushima nuclear plant in Japan. Since 2014, we have witnessed the election of an ex-TV celebrity star, Donald Trump, as President of the United States; the United Kingdom voted to sever its 44-year membership in the European Union—the so-called Brexit; and, in an age of unprecedented migration of people, there have been election gains for alt-right politicians across Europe including the UK, France, Germany, Hungary, and Poland.

 

There are some parallels between the election of Trump and the surprising Brexit result in that in both countries a large swathe of voters, often white working class, were discontent with the status quo. These voters felt increasingly insecure—left behind by economic globalization and socially marginalized by neoliberal welfare policies—and had lost faith in mainstream politicians meant to serve them. Economically depressed “rust belt” manufacturing and coal-mining regions and mid-American states voted for Trump, just as the post-industrial towns in the north of England, Wales, and rural England voted heavily to leave the European Union. Seven of the poorest ten regions in Northern Europe are in England. All seven had substantial Brexit majorities. In 2016, Barack Obama attributed the two electoral earthquakes partly to social dislocations that have resulted from a rapidly changing world: “Globalization combined with technology combined with social media and constant information have disrupted people’s lives, sometimes in very concrete ways ... A manufacturing plant closes, and suddenly an entire town no longer has what was the primary source of employment ... making people less certain of their national identities or their place in the world.” The election of Trump and the EU referendum result have left the US and Britain acutely divided by age, class, gender, and education. These social fissures are not new but reflect the consequences of post-1990 economic globalization and neoliberal ideology.

 

Added to this cauldron of uncertainty and social turmoil is the phenomenon of post-factual politics and “fake news” written and disseminated through social media with the intent to mislead in order to damage an entity or politician, and/or gain political advantage. Social media platforms and global-spanning corporations have challenged the traditional sources and centers of authority as never before across the developed world. Even in the age of Amazon, Google, Apple, and Facebook, the argument of this book is that the classical social thinkers speak to the present as much as the past. We shall attempt to illustrate the startlingly contemporary relevance of the classical analysis of capital’s crisis-generation modus operandi and its ever-expanding destruction of industrial jobs and the planetary environment.

 

In the second edition, we made reference to the profound changes in global capitalism and in perspectives that have taken place, which affect the way that modernity has been studied over the last three decades. Changes in the condition of modernity include the ascendancy of neoliberalism, the emergence of new major economic players such as the People’s Republic of China, India, and Brazil, and the all-pervasive diffusion of labor-saving digital technology. And, in addition to movements of capital and goods, the mass migration of people to Western Europe and North America has made multiculturalism, the politics of equality, and managing diversity in organizations major areas of research. A key issue for social scientists is the effect of globalization on the workplace, society, and beyond. An important theme in the literature is convergence in capitalism, which affects production and employment practices in different regions of the world. The convergence debate has a long antecedence in neoclassical economic theory. Detractors, however, emphasize the existence of “varieties of capitalism” and divergence in capitalist behavior as evidence of the importance of the power of local culture, politics, and agency. Over the last 40 years, sociologists have witnessed the ascendancy of rival intellectual approaches to the study of social phenomena. For example, under the rubric of postmodernism, the traditional approach to researching aspects of society, loosely described as positivism, has been challenged by constructionism and intersectionality. The constructivist’s view challenges researchers to re-examine their frames of reference, the research process itself, and the production of knowledge. The concept of intersectionality has been utilized by social scientists as an analytical and organizing tool for investigating social injustices and developing social policy. It has been defined in various ways, but this inspirational description points toward a general consensus:

 

Intersectionality is a way of understanding and analyzing the complexity in the world, in people, and in human experiences. The events and conditions of social and political life and the self can seldom be understood as shaped by one factor. They are generally shaped by many factors in diverse and mutually influencing ways. When it comes to social inequality, people’s lives and the organization of power in a given society are better understood as being shaped not by a single axis of social division, be it race or gender or class, but by many axes that work together and influence each other. Intersectionality as an analytic tool gives people better access to the complexity of the world and of themselves. Importantly, the postmodern approach, as Eagleton and Lyotard notably argue, eschews meta-narratives such as Marx’s conception of history, whose function was to legitimize the illusion of a universal human history, and celebrates the triumph of local fragmented specificities over any kind of totality.
In this intellectual climate, inevitably, there will be disagreement among contemporary sociologists over which classical social theorist should be included in a text on classical theory. The membership of the classical canon is important, for the canon provides a shared language, a focus, some kind of identity for the discipline, and it shapes both the intellectual discourse and the trajectory of social research. In the first edition of Capitalism and Classical Social Theory, we chose to be more inclusive and extended the coverage of the familiar sociological canon established around the 1970s—that is, the trio of Marx, Durkheim, and Weber—to include the German sociologist Georg Simmel and four women intellectuals who theorized about gender roles, gendered work, and new patterns of family life that were the consequences of the emergence of industrial capitalism. Our choice was influenced by a common criticism of the classical canon: the marginalization of gender in its authors’ theories. We examined the gendering of social theory in the nineteenth and early twentieth centuries through the work of Mary Wollstonecraft, Harriet Martineau, Charlotte Perkins Gilman, and Jane Addams.

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The Power of Kindness

The Power of Kindness

Why Empathy Is Essential in Everyday Life
edition:Paperback
also available: eBook Hardcover
tagged : neuroscience
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