Volunteers, employees, and the political economy of de-laboring: Healthy “normal” human subjects of science, 1950-2000

• In Event: 40461 - Section on Sociology of Law Roundtables
  In Refereed Roundtable (60 minute): Table 1: Medical Ethics and Law

Abstract

This paper explores the stories and structural conditions of the first healthy people at the US National Institutes of Health’s intramural research hospital to serve in scientists’ experiments. Scientists and administrators called this group the “normal patients,” or Normals. Eventually thousands of “normal patients” between the 1950s and 2000s would move into the NIH research hospital, called the Clinical Center, to live in hospital rooms, eat hospital food, and follow (or flout) hospital rules. They arrived through the NIH Normal Volunteer Patient Program, which harnessed outside organizations in all areas of postwar American life through legal contracts—specifically procurement contracts—to recruit and send people to be the subjects of NIH researchers’ studies. Involving more than thirty organizations between the 1950s and the 2000s, these “contractors” included colleges and universities, labor unions, civic groups, federal prisons, and churches. By negotiating and bargaining with NIH of behalf of their members—ending their contracts if unsatisfied—these organizations changed the rules and practices of NIH’s Normals Program for everyone. Methods: The research draws from published and archival textual and photographic evidence as well as the author’s oral histories with more than 100 former healthy human subjects at the NIH Clinical Center between 1954 and 2009. The research is also based on a first-time FOIA release about the Normals Program. Analysis: Sociologists have used the term “de-laboring” to refer to the process in which some groups of people who are employees in all but name are legally exempted from being paid fair wages. At NIH, structures and discourses of “work” created a useful ambiguity that allowed NIH and contractors to recruit Normals by code switching between the virtues associated with charitable service and the respectability of employment under the sign of capitalism—with consequences for racism, normalcy, science, and labor in modern America.

Author

• Laura Stark, Vanderbilt University