Imagining Other-Wise: Speculations on Race, Gender, Sexuality, and the Future of Bioethics

Esther Jones gives a teaser of her keynote at this week’s Northern Network for Medical Humanities Research Congress at the University of Leeds.

Science and speculative fictions are rife with images of the “mad scientist.” From as early as Mary Shelley’s Frankenstein, which we might recognize as the prototype for the “mad scientist” trope, to writings in the contemporary era, images of various versions of the troubled Dr. Frankenstein—isolated, obsessed with forbidden science, engaged in secret unspeakable acts that ultimately produce the most hideous of progeny or catastrophes of nature—abound in the popular imaginary. Even as more contemporary science fiction works move away from the depiction of the isolate scientist in pursuit of professional fame and groundbreaking glory to the representation of corporate entities wielding technological advances unchecked by quaint societal mores and lagging legal restraints, one of the core concerns of the science fiction cautionary tale remains: will we allow the pursuit of biomedical and technological advances to outstrip our humanity? How do we tame the monsters of our own making?

Unfortunately, we cannot relegate the provenance of curious and appalling biomedical experiments—as well as the questionable ethical logic underpinning them—to the absurdly fanciful and far-fetched imagination of science fiction writers. We need only look to history around the world to make note of a wide range and variety of extremely troubling medical practices that reveal the limits of biomedical ethical principles and the inconsistent application of ethical standards in real life, especially with respect to devalued social groups. A few short examples illustrate the point in the specific realm of medical experimentation:

Josef Mengele, an SS medical officer in the Nazi army assigned to the death camps of Auschwitz/Berkinau in Poland from 1943-1945, infamously performed a range of agonizing, often lethal experiments on Jewish and Roma twins, dwarves, and others presenting with so-called genetic anomalies in the name of advancing biomedical research on factors of environment and heredity in human differentiation. His living research subjects were not rendered basic standards of palliation or anesthesia, and many were euthanized to expedite postmortem autopsy.

Participants in the Tuskegee Syphilis Study
(NAID 956104)

From 1932 to 1972, the United States Public Health Service sponsored an experiment in Macon County, Alabama, U.S.A. to determine the natural course of untreated, latent syphilis in black males. Commonly referred to as the Tuskegee Syphilis experiment, the long-term study comprised 400 syphilitic men and 200 uninfected men who served as controls. When penicillin emerged as a treatment for syphilis in the 1950s, the government-sponsored program refused—despite numerous opportunities to rethink or end the program—to administer the therapeutic standard of care in order to observe how the “natural course” of the disease affected the daily lives of the men. This unethical course of action was deemed acceptable despite the findings of the equally concerning and similar Oslo syphilis study of 1890-1910 that deemed untreated syphilis, whether latent or active, to be sufficiently dangerous to warrant treatment.

Aubrey Levin conducted his homosexual “aversion therapy” project in South Africa from 1969-1974 under the auspices of the South African Defence Force during apartheid. Levin lead a team of military psychologists and psychiatrists who, in opposition to generally accepted standards of medical treatment, forcibly subjected conscripts to electric shock therapy designed to purportedly cure homosexuality, and reportedly subjected hundreds of others to experimental sex change operations.

These examples represent but a few relatively recent historical examples of unethical and malevolent practice by medical doctors. Unlike so many of the fictive representations of the mad scientist, such practices have not been carried out in isolation, shame, and secrecy. Rather, they have often been supported, if not initiated, by the State; carried out by teams of researchers and practitioners; and bolstered by widely accepted ideologies that justify (ab)use of maligned populations, whether they be ethnic/racial, gendered, sexual, or another type of Other. Indeed, such practices have more often been the norm rather than the aberrant work of individual rogues and deviants.

The failure to apply the basic standard of care as well as the most rudimentary of moral and ethical consideration to marginalized and vulnerable populations raises questions of not simply how such atrocities could have happened within a field that is understood to be essentially altruistic, but why some groups lie outside the boundaries of ethical consideration and treatment. How is the Other imagined in biomedical discourse? What is it that enables otherwise intelligent people not only to violate the simple Hippocratic creed to do no harm, but to go further in justifying clear and obvious unethical practices in the name of medical scientific advancement? What role does speculative fiction play in enabling us to imagine Other-wise?

At the coming Northern Network for Medical Humanities Research Congress  20-21 September 2018, I anticipate the opportunity to elucidate the ways in which speculative fiction, generally, has the capacity to encourage us to imagine Other-wise: that is, to radically reimagine biomedicine’s relationship to alien(ated) Others, and how black women’s speculative fiction, specifically, postulates alternative ethics that allow us to perceive, to think, and to act more humanely and ethically across our many forms of human variation.

 

ESTHER L. JONES is Associate Provost and Dean of the Faculty and the E. Franklin Frazier Chair of African American Literature, Theory and Culture at Clark University in Worcester, MA, USA.  Her research and teaching specializations include race and gender in the medical humanities, literature and medicine, speculative fiction, and black diasporic women’s literature. She is the author of Medicine and Ethics in Black Women’s Speculative Fiction (2015 Palgrave MacMillan series in Literature, Science, and Medicine), and the editor-in-chief for a newly contracted major reference work tentatively titled “Health Humanities in Global Context: Race and Ethnicity Across the World” (Springer Nature). She is on Twitter @estherljones

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