Informing Consent: Unwitting Subjects in Medicine’s Pursuit of Beneficial Knowledge

An Exhibit done in conjunction with the UW-Madison Go Big Read Common Book Program for 2010-2011, which chose Rebecca Skloot’s “The Immortal Life of Henrietta Lacks” for the campus to read and discuss. The exhibit (which runs from September 29th to March 31, 2011) consists of 13 display cases containing a variety of photographs, magazines, journals, books and artifacts. Installation by History of the Health Sciences librarian, Micaela Sullivan-Fowler and guest curator, History of Science graduate student, Lynnette Regouby.

A copy of the introductory essay is available for download. Countless visitors have discussed the relative fairness mentioned in this essay.

Case #1: It was important to contextualize Henrietta in 1950s Baltimore. Using artistic license and original Ebony and Good Housekeeping ads and articles we hoped to create the world that Henrietta knew. Readers will recognize the importance of Henrietta's red nail polish in the Skloot narrative.

Case 1 - Honoring Henrietta

Illustrates Henrietta’s 1950’s Baltimore
Case #2 The story of a novel treatment for rheumatoid arthritis and the doctors who learned to watercolor from French painter, Raoul Dufy.

Case 2 - The Art of Healing

The story of physicians who worked with black rheumatoid arthritis patients and French painter, Raoul Dufy
Case #3 Captive Subjects-Is There Such a thing as Voluntary? This case includes the story of the mid 20th century malaria studies at Illinois State Prison as well as illuminating the human experimentation protocols that were suggested after the Nazi war tribunals.

Case 3 - Captive Subjects - Is There Such a Thing as Voluntary?

Illustrates Nazi Germany’s participation in human experimentation and the 1940s malaria trials with prisoners in the United States
Case #4 - The 1976 Ebony article that initially revealed the story of HeLa (other articles had misnamed her).

Case 4 - HeLa in the Press

Contains articles from the black press that revealed the story of Henrietta in the 1970s
Case #5 The radium packet illustration from Richard TeLinde resonates for exhibit visitors, this was part of Henrietta's treatment.

Case 5 - The Science of HeLa, Part I

Contains articles from the medical literature, like articles by  Richard TeLinde and George Guy that Skloot mentions at length in her story of Henrietta’s treatment.
Case #6 Skloot told of the Tuskegee Polio trials using the HeLa cell. Original clippings and secondary literature.

Case 6 - The Science of HeLa, Part II

Contains articles from the magazine and newspaper literature that Skloot mentions about the Tuskegee Polio study and the Collier’s article that misidentified Henrietta.
Case #7 The story of the McCardle Memorial Laboratory for Cancer Research

Case 7 - UW Cancer Research A

The story of McCardle Laboratory for Cancer Research, including a fascinating story of the early façade design of the building.
Case #8 More on UW-Madison's work in cancer research, including the work of Nobelist, Howard Temin

Case 8 - UW Cancer Research B

More on the study of cancer at UW-Madison.
Case 9: Human Subject Experimentation in our own backyard. Researchers, Arthur Loevenhart and William Lorenz worked with psychiatric patients during the 1920s-1940s.

Case 9 - Human Subject Experimentation in Our Own Backyard

The story of UW researchers, Alfred Loevenhart and William Lorenz who worked with psychiatric patients in the 1920’s-1940s.
Case #10 Informed Consent at UW and its hospitals

Case 10 - Informing Consent

Contains various forms chronicling the use on different forms of consent.
Case #11 The story of marketing HeLa and other biological components.

Case 11 - Patenting Life

Shows the evolution of the sale of HeLa to researchers-asks questions about who owns tissue and body parts.
Case #12 The question of tissues ownership as exemplified by UW-Madison's Lynn Allen-Hoffman

Case 12 - Immortal Skin

Tells the story of UW researcher, Lynn Allen-Hoffmann, who works with Stratatech, developing “immortal skin” for burn patients.
Case #13 The Bits We Couldn't Quite Fit, including advertisements, clippings on Night Doctors, etc.

Case 13 - The Bits We Couldn’t Quite Fit

Advertisements and magazine and newspaper articles illustrating Skloot’s themes of benevolent deception, night doctors and how women were generally treated for cancer in the early 1950s.

For further information on the materials used in “Informing Consent,” and the text used throughout to create a narrative thread that addressed many of Skloot’s complex themes, please contact msullivan at library.wisc.edu.

Page last updated: July 29, 2011
Questions or suggestions? Contact Micaela Sullivan-Fowler