Cultural Bioethics: Seeking Narrative Contexts for Human Subjects Research

While navigating the jargon of academic cultural studies for a review in the Charlotte Observer, Brent Winter does a good job of conveying the key concept in a new book that argues for a “cultural bioethics”:

During the Tuskegee syphilis study, researchers spent 40 years observing 254 black men with syphilis without treating them – and without their knowledge or consent. Since then, ethical guidelines governing research have been thoroughly revised. Misdeeds like that aren’t supposed to happen anymore.

But current bioethics are not complex enough to meet the ethical challenges we face, writes Duke English professor Karla FC Holloway, in “Private Bodies, Public Texts: Race, Gender, and a Cultural Bioethics.”

For example, in 1996 Columbia University researchers studied boys whose older brothers had been convicted of juvenile offenses. The researchers got their subjects’ names from the probation department, even though juvenile criminal records are supposed to be private.

The boys’ parents signed consent forms, but one mother’s statement belies the slippery nature of “consent.”

“I felt at the time that if they could find me and knew I had a six-year-old son,” she said, “they had enough power to affect the well-being of my sixteen-year-old son who was being held in a detention facility.”

Also, all the boys in the study were black or Hispanic, which Holloway says is far from coincidental: “The bodies of women and blacks are always and already public,” she writes.

She concedes that ethical strides have been made since Tuskegee, especially with the recent innovation of “narrative medicine,” which focuses on patients’ stories about their experiences. But she says narrative medicine “fails to give constitutive weight to the … context of that experience.”

If words like “constitutive” throw you off, welcome to the field of cultural studies. This book, like others of its kind, offers a critique of some aspect of culture, and it pulls in resources to get the job done. But the lingo does get thick, and “Private Bodies” is no exception. For Holloway, experience and identity rise out of complex contexts that science, law and medicine overlook in their drive for efficiency and practicality.

To ignore context is to risk the ethical lapses of a Tuskegee or the 1996 Columbia study, she says. As an alternative, Holloway proposes an interdisciplinary “cultural bioethics” that acknowledges the value of contexts and narratives. Read more

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