chapter  41
14 Pages

Race and Bioethics

WithALEXIS SHOTWELL, AMI HARBIN

Racial difference has been of central concern in many canonical cases in bioethics. Consider two historical cases: Nazi medical experimentation and the now-infamous Tuskegee Syphilis Study. It was in response to revelations about Nazi experiments on human subjects that the Nuremberg Code was formulated. The Code sets out standards for informed consent, treatment of research subjects, and the necessity of predictable benefit from any given experiment. Nazi experimentation was based on an explicitly racializing notion: That Jews were a separate, and lesser, racial group and therefore appropriate subjects for experimentation. The Tuskegee Study of Untreated Syphilis (or “the Study”) was a 40-year (1932-72) clinical study that observed the progression of (mostly) untreated syphilis in a group of black men living in poverty in the U.S. These men were told that they were receiving free health care, when in fact they were not given effective treatment for syphilis even after such treatments were medically established. The Study was ended only when journalist Jean Heller broke the story. Responses to Tuskegee included the establishment in the U.S. of an Office for Human Research Protections, which aims to curtail the kinds of research abuses evident in the Tuskegee Study. In this chapter, we will use the Tuskegee Study as a touchstone for considering how racialization and bioethics matter to one another.