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Vernacular Bioethics

Culture is ordinary: that is where we must start.
Raymond Williams

The literary critic Raymond Williams’s argument for the “ordinariness” of culture was a battle cry for a new approach in literary studies. It sought to move his field away from the elitism and chauvinism of Matthew Arnold and other Victorian critics and toward a more anthropological view of culture as universal across social classes. Williams had difficulty understanding why the study of culture should produce “this extraordinary decision to call certain things culture and then separate them, as with a park wall, from ordinary people and ordinary work.”

I wish to make a similar claim about the field of bioethics.

Bioethics is ordinary: that is where we must start.

My claim that bioethics is “ordinary” is a corollary to Williams’s argument for breaking down the wall separating high from low. Bioethics is not merely a part of academia but is also a common feature of a large number of non-academic people’s lives. An illustration of the “ordinariness of bioethics” was made by Cheryl Sanders in her critique of a 1989 article published in the Kennedy Institute of Ethics newsletter. The article had argued for the importance of an African-American perspective on bioethical issues, but Sanders noted that included in this “call for dialogue” was a parenthetical observation that there were only a small number of African-Americans doing scholarly work in the field. Contrary to this implicit claim of paltriness, Sanders asserted that African-Americans were engaging in discussions about bioethics and doing so on a daily basis, but not necessarily in ways that European-Americans would regard as scholarly or even noteworthy. The problem, she saw, is not that a tradition of discourse about bioethics does not exist in the African-American community, but that the academic community suffers from a scholarly aphasia. Sanders’s comment could easily have been made of many other communities. What she alluded to (but sadly did not go on to explore in greater depth), and what I would like to suggest, is that the study of bioethics should attend equally to the way bioethical issues are reflected upon outside of the academy.

Indeed, some of the most interesting kinds of theorizing in bioethics today come from vernacular sources. The notion of attending to vernacular theory in cultural criticism derives from an interest, in aesthetics and epistemology, in the theories found within non-Anglo cultures. In those fields, attention to the vernacular has been shown not only to provide subject matter for scholarly attention but also theoretical perspectives that enrich academic investigations. Thus Houston Baker – who coined the term “vernacular theory” – reads African-American literature through a theoretical frame gained from an analysis of the blues. In The Signifying Monkey, Henry Louis Gates observes that reflecting on the semiotics of life has long been part of the African-American ethos: he notes, “It is amazing how much black people, in ritual settings such as barbershops and pool halls, street corners and family reunions, talk about talking.” Janice Radway studied how women form reading communities around romance novels. Radway’s study was particularly significant for her willingness to see that the women were not “passive consumers,” mere addicts to one of the masses’ opiates, but were actively using the texts in creative ways in response to their social environment. So Thomas McLaughlin has advised other cultural critics to “listen to the vernacular.”

At a meeting of the American Society for Bioethics and Humanities, Cheryl Chase, the founder of the Intersex Society of North America, related how she attempted to get the support of a number of prominent bioethicists during her initial years of activism. She described how time and again she was politely informed that there did not seem to be a moral problem with surgeries to make intersex genitals look more normal. From the bioethicists’ point of view she was not exposing a pattern of misinformation or revealing the presence of victims of experimental surgery, for she did not merely have a disagreement with the surgical practice but rather a wholly different theory of gender identity than had been implicitly accepted by the majority of scholars in medical ethics. Chase does not merely have a story, nor is she merely “thinking with stories” (as Arthur Frank describes with other groups); she has used her story to reflect on the theory of gender within her society.

Who am I? I now assert both my femininity and my intersexuality, my “not female”-ness. This is not a paradox; the fact that my gender has been problematized is the source of my intersexual identity. Most people have never struggled with their gender, and are at a loss to answer the question, “How do you know if you are a woman (a man)?” I have been unable to experience myself as totally female.

That this quote appears in a book about body image and gay identity in “lesbian, bisexual, gay, and transgender communities” but not intersexuals reveals once again how estranged Chase’s theory-making is from traditional academic categories.

Similarly, criticism of cochlear implants did not come primarily from within traditional bioethics but from the deaf community. The idea of “community” from this perspective became defined not merely by the group in which one was born or raised but also by a literal body community. For those interested in taking seriously community involvement in bioethics, the deaf community has redefined community – or at the very least challenged the traditional definition of community – in a manner that is theoretically different from that used by communitarians.

While the perspectives of the intersex and the deaf communities are now well-known within bioethics, I would like to mention briefly a vernacular take on a subject that has a long history of attention within the bioethics discipline: research subjects. Created by Bob Helms, the zine Guinea Pig Zero provides a fascinating example of vernacular thinking on research issues. Helms first published his ’zine in 1996 and he intended it to be akin to other work-oriented ‘zines such as Dishwasher and Temp Slave!. While dishwashers and temporary workers seem a relatively easily identifiable group, the particular workers to which Helms is referring are professional research subjects, or to use his own nomenclature, “professional guinea pigs.”

When I rent my healthy body to medical science, I am the temporary employee of a research team, paid as a contractor for each job. I do my bleeding, pissing work in a blurry area between patient and subject. This blurry area has made for intense public debate, and the questions relating to the guinea pig as a worker are not even considered by lawmakers in this country (yet they are in Canada or France). This is just as well, because the legal “rights” of working people in this country exist primarily in the realm of illusion.… If it served the interests of “Big Pharma” to carefully track and regularize relations with their medical meat-puppets, it would have been legislated fifty years ago. On the other hand, it takes the human research subject of a higher level of civilization when he or she looks in the mirror and sees the face of a specialized worker, whose craft has its own wondrous history, its own jargon, and its own weird little culture.

Helms’s overt self-reflexivity reveals a patient/subject/worker clearly aware of the social powers that drive the kind of activity he uses to pay his bills as well as the kind of conflict of interests that could easily put him in harms way. Just as cultural-studies scholars began to attend to the way their consumers were not merely consuming but thinking, bioethicists need to attend to how such individuals as the professional guinea pig is not merely a passive subject of a study but also actively observing the observers. Perhaps one of the most controversial features of Helms’s journal was the “Research Unit Report Cards,” which rated research labs according to whether they were substandard on nine measures: (1) payment below $200/day, (2) more than one office to deal with, (3) very bad food, (4) excessive security, (5) mediocre staff skills, (6) evasive behavior or wording related to informed consent, (7) changing the dates of a study without paying us for the hassle, (8) extra visits for procedures that should be handled during the screening day, and (9) evading responsibility when something goes wrong. While informed consent is one of the criteria, there is also attention to labor issues such as pay and “work” conditions. There is also a general concern for the respect for persons that is expressed in a concern for the environment in which they carry out their work.

While I am not advocating that all of bioethics become the purview of vernacular critics, I do believe that the discipline can be significantly enriched by an engagement with these perspectives.

Published on: June 21, 2006
Published in: Bioethics, Clinical Trials and Human Subjects Research

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