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Dangerous Medicine: Militarized Science And America’s Experiments With Hepatitis, Part II

Sydney A. Halpern, PhD
Lecturer, Medical Humanities & Bioethics
Northwestern University Feinberg School of Medicine

For over thirty years, 1942 through 1974, American researchers conducted experiments that deliberately infected people with unmodified hepatitis viruses. The aim was to discover basic features of the pathogens, information necessary for developing preventive and therapeutic measures. The human subjects included mental patients, persons with cognitive impairments, conscientious objectors to the military draft, and inmates of prisons and reformatories. This talk presents major finding from a forthcoming book based on extensive archival research. It retells the story of human-subjects abuses in the U.S.

This talk, the second in a two-part series, examines struggles over depictions of the human subject in risk-laden medical research. The biomedical-military elite won widespread acceptance for hepatitis-infection experiments by portraying subjects as either the recipients of medical beneficence or else as freely choosing to participate for the purpose of enhancing the common good. But with rise of rights movements in the late 1960s and the early 1970s, scientists and their sponsors lost both control over the dominant discourse about human subjects and access to the residents of custodial institutions.

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Hosanna Krienke
Doctoral Student, English Department
Graduate Affiliate, MH&B Program
Northwestern University

“What connection can there be?”: Narrative Medicine, Network Theory, and the Victorian Novel

Henry James famously described nineteenth-century novels as “large, loose, baggy monsters.” Novels from this period have meandering plots, include scores of characters, span hundreds of pages, and depict a bewildering mix of crucial plot points and incidental detail. This talk will focus on Charles Dickens’s masterpiece Bleak House (1852-3), a thousand-page novel with over seventy characters. I will describe how narratology deals with such large-scale narratives through the framework of network theory, a model which I argue can be usefully applied to contemporary efforts to theorize a narrative approach to medicine. While current narrative medicine often focuses on individuals’ life stories, Victorian novels and network theory formulate a way to articulate not just stories of the self, but stories about social interaction and complex systems.

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Autumn Fiester, PhD
Director of Education
Director, Penn Clinical Ethics Mediation Program
Faculty, Department of Medical Ethics & Health Policy
Perelman School of Medicine at the University of Pennsylvania

Why the Clinical Ethics We Teach Fails Patients

The dominant paradigm used to teach clinical ethics in both undergraduate and graduate medical education is "principlist" in approach, based on the theory of principlism set out by Tom Beauchamp and James Childress. But when the theory is converted into method, this “Principlist Paradigm” functions in a way that undermines a nuanced assessment of clinical ethics issues and offers students and residents an inadequate tool for handling ethics dilemmas at the bedside, where most clinical ethics issues are resolved. The Principlist Paradigm operates like a short, over-simplified diagnostic check-list that scans for a handful of ethical considerations in clinical encounters and then makes its normative assessment based entirely on that reductive set of ethical concerns. Because the Principlist Paradigm detects only a limited range of moral considerations, the frequent result is a "false negative," in which the clinical situation appears to have no outstanding moral obligations when in fact others remain. The Principlist Paradigm under-trains clinicians for the difficult ethical dilemmas they face in practice. The author advocates a re-examination of this standard approach to teaching clinical ethics.

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Alka Menon
Doctoral Student, Sociology Department
Graduate Affiliate, MH&B Program
Northwestern University

The Cutting Edge?: Cosmetic Surgery in Malaysia

What counts as medicine? How are marginalized specialties within medicine taken up in countries with middle income resources? This talk begins to address these very broad questions by examining the case of cosmetic surgery in Malaysia. I will give a very brief overview of Malaysia's health system and demographics and then explore how Malaysian plastic surgeons feel about their connection to medicine and their professional status and obligations with examples of their own accounts. This talk draws from pilot interviews with Malaysian plastic surgeons and patients as well as archived oral histories and documents from surgeons in British Malaya.

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Anna Terwiel
Doctoral Student, Political Theory
Graduate Affiliate, MH&B Program
Northwestern University

Autonomous Patients, Human Weapons, and Other Ways to Think of Hunger Strikers in Prison

The World Medical Association argues that physicians should treat hunger strikers as autonomous patients. The principle of autonomy gives such protesters the right to refuse medical treatment, including artificial feeding, provided their refusal is informed and voluntary. It also aligns with how hunger strikers often describe their self-starvation: as a rational, deliberate “weaponization” of their body or their life. However, I argue that the framework of patient autonomy undermines rather than secures hunger striking as a protest practice. Carceral authorities and courts often successfully contest that prisoners’ decisions are indeed informed and voluntary and thereby justify forced feedings. More fundamentally, the principle of autonomy misses the point that hunger strikers starve themselves not simply as a free personal choice but in a bid to affect others and create change. Rather than include hunger strikers in medical ethics as autonomous patients, I argue, we should refuse to frame hunger striking as a medical issue altogether.