In 2010, Rebecca Skloot published The Immortal Life of Henrietta Lacks, a New York Times bestseller about a poor black woman in the late stages of cancer in 1950s Baltimore whose doctor removed cervical tissue from her without her knowledge. By remaining viable outside of Lacks’s body, the cells became “immortal” and thus quite valuable; scientists using them have been able to pursue research that would have been unimaginable beforehand, leading to achievements such as the polio vaccine and advances against cancer and Parkinson’s disease.
Skloot’s book captivated readers by revealing the story of exploitation behind the development of what have become known as “HeLa cells.” Similar episodes of scientific advancement on the backs of vulnerable subjects have been exposed before, from J. Marion Sims’s gruesome mid-19th-century experiments on black slaves that laid the groundwork for the modern field of gynecology to recently uncovered evidence that in the 1940s, U.S. researchers deliberately infected Guatemalan patients, prisoners, and soldiers with syphilis to test new medications. Yet it still can be hard to believe that any scientist could be involved in such ethically vacuous behavior as taking and distributing unsuspecting patients’ tissues without consent, acknowledgment, or compensation.
If there is a shortcoming in Skloot’s book, it’s that the singular focus on the HeLa cells’ history gives the impression that such biomedical opportunism is a relic of a bygone era. The latest book by science journalist Harriet A. Washington, Deadly Monopolies: The Shocking Corporate Takeover of Life Itself—And the Consequences for Your Health and Our Medical Future, is a reminder to think carefully about such intuitions.
Washington’s central thesis is that in the 1980s, Congress and the courts laid the foundation for a “medical-industrial complex,” which, Washington argues, benefits research industries at the expense of both consumers and human research subjects. The 1980 Bayh-Dole Act allowed universities to partner with private companies by selling and licensing the intellectual--property rights of research findings supported by federal funds. Around the same time, the U.S. Supreme Court held in Diamond v. Chakrabarty that living organisms altered or isolated by researchers are patentable.
These developments brought together the university and corporation in a manner that transformed research culture as well as its aims. Washington notes that scientists in the pre-Bayh-Dole era were surely motivated by ambitions outside of healing individuals (fame, professional recognition), but commercial success and financial rewards were not as commonly sought.
Jonas Salk, for example, was in many ways the model of pursuing science in the public interest. After developing the polio vaccine in the 1950s, Salk turned down the chance to profit from its commercialization. When journalist Edward R. Murrow asked who owned the patent, Salk famously replied, “The American people, I guess. Could you patent the sun?” Washington’s book exposes the shifting social and legal dynamics that now make Salk’s sentiment seem remarkably quaint.
Much of Deadly Monopolies explores contentious issues in modern biomedical research that have been aggravated by the field’s commercial emphasis. For example, patients’ ownership of and control over their own human tissues throughout the research endeavor have not improved as much as one might think, with law and research norms deferring substantially to scientists and research entities.
Indeed, if what happened to Henrietta Lacks occurred today, it would be largely unremarkable; researchers routinely use patient specimens in a manner not wholly unlike the development of HeLa cell lines.
Improvements have occurred on the front end in terms of removing personal identifying information from biological samples and including boilerplate informed-consent documents (whose growing length and complexity raise significant questions about whether such consent is meaningful). But the overall dynamic of patients’ diminished rights regarding the use of their own body tissues continues largely undisturbed. Washington reminds us of the story of John Moore, whose tissues were surreptitiously taken by his doctor during a splenectomy, along with other biological materials in subsequent follow-up visits, and developed into a profitable cell line. In 1990, the California Supreme Court declared that Moore had no property interest in this line, despite noting the physician’s failure to obtain consent and intentionally deceiving Moore about his financial stake in these biological materials.
Washington demonstrates how such issues are part of a broader labyrinth of policies and practices that benefit private interests at the public’s expense. For example, she critiques the pharmaceutical industry’s claim that the cost to develop a new drug exceeds $800 million—a figure used to justify drugs’ high cost—where other evidence disputing the creative accounting used to come to this astonishing number suggests that the real cost may range between $71 million and $150 million. Then there is the burgeoning practice of outsourcing clinical trials to cheaper sites across the globe to test new drugs, whereby “the dearth of health care in much of the developing world leaves its people vulnerable to experimental exploitation and abuse.” Washington also discusses biocolonialism: “Researchers and pharmaceutical companies have designs on the diverse biological riches of poor countries because much of the biodiversity of the West has vanished,” she writes, giving rise to Western companies asserting intellectual-property claims over medicines used by indigenous communities for hundreds of years.
Deadly Monopolies also addresses growing efforts to patent human genes. Roughly 20 percent of the human genome has been patented, a situation that according to Washington can impede scientific innovation and clinical care by granting proprietary interest to parties who can dictate how certain diseases are researched and diagnosed. Washington briefly points to the experiences of Genae Girard. After being diagnosed with breast cancer and receiving test results showing that she has a genetic predisposition for ovarian cancer, Girard sought a second test to help her decide whether she should preemptively remove her ovaries. She was not able to obtain a second independent genetic test because Myriad Genetics, a company based in Utah, had patented the relevant genes, preventing others from offering this service.
What can all of these diverse issues possibly have in common? Washington links them to “the corporate takeover of life itself.” Though she is not the first to raise many of these concerns, Washington offers an overarching framework that enables readers to see connections that are often obscured. The book’s brilliance lies in the compassionately told narratives of individuals whose lives have been affected by the increasing corporate control of scientific research. Rather than simply writing another book about biomedical wrongdoing, Washington with her journalistic approach provides a more humane account of the problems tied to the for-profit nature of today’s research industry. In doing this, Washington accomplishes what has thus far escaped previous authors. She makes the case for a broader political consciousness of science and technology.
This leads to her primary recommendation: repealing the Bayh-Dole Act. If achieved, this proposal could well bring reform that would address many of the concerns expressed in the book. Yet it does raise one question. To what extent was the passage of Bayh-Dole a consequence of an already changing research culture rather than its cause? As Washington describes in her previous book, Medical Apartheid, which documents the long history of medical experimentation on African Americans, abuse and exploitation in medicine predate Bayh-Dole by several decades. The monetary incentives created by Congress may add a unique dimension to this problem, but they are not the only cause.
So, perhaps reform exists in additional remedies beyond those Deadly Monopolies recommends. This is precisely the conversation an important book starts in order to challenge readers to see the world differently so that they connect the disparate dots. Deadly Monopolies is an extraordinary achievement in this and many other regards.
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