Introduction: From Bioethics and Humanities to Biohumanities?

Bioethics may have been invented in June 1816, two hundred years ago this month, when a seventeen-year-old woman began to write her first novel. Spending her summer in a villa on the shores of Lake Geneva with Byron and Shelley, the celebrities of the British Romantic movement, Mary Shelley took the myth of Prometheus so central to her husband’s work and retold it as a study in the ethics of biomedical experimentation. In Percy Shelley’s version of humans’ acquisition of fire from the gods, his humanist hero Prometheus is finally unbound, Zeus thwarted. Mary Shelley does not allow her own Prometheus, Victor Frankenstein, to triumph, but she also resists the moral configuration of a simple cautionary tale. Frankenstein is culpable not because he makes a living creature but because he rejects it. He fails, that is, to match his extraordinary technical success with attention to the most fundamental ethical tenet, the duty to be responsible for the subjects and outcomes of his work. One might say that Frankenstein is punished less for hubris than for the narrow self-interest with which he imagines the effects of his act. He belatedly recognizes that he has done wrong, but in his fit of selfish remorse he fails to do anything to ameliorate the ripples of harm he has already put into motion.

Shelley, unlike Frankenstein, spends much of the novel developing a panorama of the suffering that arrogant ambition can generate: think of Justine, William, Elizabeth, but also of Safie’s enslaved mother, of Walton’s freezing crew and his anxious sister, and of the bereft monster himself. Shelley gives the creature his own articulate claim on our attention, even after Frankenstein has explicitly refused to listen to him, denying that there can be “community” between them. As a result she gives us a bioethics that cannot be limited to the regulation of irresponsible research or extricated from the novel’s networks of familial, social, cultural, and economic entailments.

The power of literary narrative lies in its particularity and specificity, qualities that resist the generalizations of non-narrative biological and epidemiological thinking. It can be appealing to focus on represented events within their textual petri dish, as the clinical ethicist might focus on moral decision-making in the limited setting of the particular patient-clinician encounter, unmindful, for instance, of the many other ill people out there who are not—and may never be able to become—patients. This deep but narrow focus might be one of the reasons that medical humanities found a foothold in health professions education and in bioethics: literary texts, lab experiments, and clinical cases all permit a comforting illusion of potential mastery.

The articles in this theme issue of Literature and Medicine, developed under the rubric “literature and bioethics,” challenge this illusion. They may be read as descendants of Frankenstein, showing us that fiction prefigures science and can do bioethics as well as illustrating it. They also explore and model an ethics of representation and reading that illuminates not just the particular unethical act but the embeddedness of any such act and its causes and effects in contexts that demand a wider range of explanations than either “bioethics” or “literature” can hope to provide.

The call for papers for this issue was deliberately broad. I wanted to know what people thought the conjunction of “literature and bioethics” might mean, how the two terms might work in tension or collaboration. What follows asks us to reevaluate both terms. By complicating the idea of bioethics itself, these articles open up questions about the ethics of biomedical science, technology, and health care—but they also interrogate the ethics of naming, of representing, of selecting what and how we read, and they show how such practices are never only about the textual experiment—even if that text describes imaginary creatures in hypothetical environments or historical figures on maps with names and borders that no longer exist. The first two articles overtly challenge our disciplinary categories. First, Jenell Johnson reveals the limitations of seeing bioethics in the narrow pragmatic context of clinical decision-making and health...