Or how we can learn to change the conversation and prevent powers from “organizing the discontent”
By Leigh E. Rich
When Drs. Silvia Camporesi, Mark Davis, and Maria Vaccarella (2017) approached the Journal of Bioethical Inquiry about a symposium on “Public Trust in Expert Knowledge” as well as a panel session at the October 2016 meeting of the American Society for Bioethics + Humanities in Washington, D.C. (Camporesi et al. 2016), two books immediately sprang to mind.
The first was Strangers at the Bedside by David Rothman (2009, originally published in 1991). Subtitled A History of How Law and Bioethics Transformed Medical Decision Making, Rothman describes his book as an attempt to understand “how bedside ethics gave way to bioethics” (2009, 11). His central thesis revolves around the concept of trust—and the erosion of trust within medicine. From a U.S. vantage point (although the Unites States is not alone in this metamorphosis), Rothman critically examines how the rise of human experimentation, especially in “The Gilded Age of Research” following World War II, the distancing of doctor from patient in terms of social demographics, culture, and connection to a common community, and rapid advances in biotechnology have helped increase expert knowledge. However, this has often come at the expense of unacceptable costs, such as wartime medical researchers carrying out studies from a bastardarized utilitarian perspective that prioritized “urgency” and the need for all citizens, including child, mental health patient, prisoner, or conscientious objector—and whether knowingly or not—to play their part. “Hands-off” policies within universities, the National Institutes of Health, and the U.S. Senate allowed post-war researchers continued freedom from oversight, and, as Rothman emphasizes, policymakers and participants alike conflated researchers’ aims with a doctor’s duty of care and therefore trusted them to act in the best interests of their subjects (and disregard the inherent conflicts that exist in this relationship). And although the concept of consent was neither non-existent nor new (having at least been acknowledged in the clinical encounter and the law), because the Allies were “not Nazis,” there was little self-reflection, recognition of moral abuses, or changes in medicine or medical research until whistle-blowers like Maurice Pappworth and Henry Beecher (Harkness, Lederer, and Wikler 2001; Beecher 1966) or Jean Heller (1972) of the Associated Press, with help from Peter Buxtun, published their exposés about clinical experimentation or governmental research like Tuskegee.
As Rothman describes, this history, alongside changes in society, medical education, and science and industry, also transformed the physician into stranger—and, by doing so, invited additional experts into the clinical encounter and underscored the need for a more formal and more inter-professional bioethics.
Thus, in large part, bioethics is born of questions of trust in expert knowledge.
But it also gives birth to the means for establishing or re-establishing trust within healthcare and health policy. [continued …]
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Rich, Leigh E. 2017. Prestidigitation vs. public trust: Or how we can learn to change the conversation and prevent powers from “organizing the discontent.” Journal of Bioethical Inquiry 14(1): 1–6.