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It’s Not Too Late to Visit Ebling Library’s “Informing Consent” Exhibit

Sandy Magana, Ph.D, Associate Professor in Social Work and Waisman Center, brought her Social Work 952 graduate class to the Ebling Library for the Health Sciences on Wednesday February 16th for a two hour visit and discussion of the multi-layered themes in “The Immortal Life of Henrietta Lacks.” Professor Magana’s class, made up mostly Social Science PhD students were talking about the history of research in communities of color. The curator’s essay that introduces the exhibit suggests that Skloot might have unfairly framed Henrietta’s doctors in with the stories of Nazi human experiments, the Chester Southam cancer studies and the Tuskegee syphilis trials. The students argued that while Henrietta’s doctors might have been doing research for the greater good, the fact that they tried to keep Henrietta’s identity secret, and that they did not inform the family until well after HeLa had become the cell of choice in research and that there is still a question of remuneration for the cells in a family that can still not afford health insurance; needed to be told in a larger narrative that included various horrors and inequities in human research.

A discussion followed about how well or poorly medical professionals communicate with patients, the role of cultural competency in health sciences schools, and how effective current Institutional Review Boards (IRBs) protocols are even in 2011. They were also intrigued with the story of the African American physician who treated black patients in the 1950s and also treated a famous French artist.

“I am embarrassed to say that I’ve never heard that story,” said one student- affirming for this curator the reason we do exhibits; to highlight material not otherwise available to students, to inform, and to elicit discussion. “Informing Consent” is here until March 31st, please come visit. Ebling Library for the Health Sciences 750 Highland Ave.

From left to right:

Honoring Henrietta. 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.

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.

Associate Professor Sandy Magana (with book), curator, Micaela Sullivan-Fowler (to her left) and graduate students in SW952: Research Methods in Communities of Color

The Awards and Interviews (and UW Initiative) Continue!

Rebecca Skloot has had a remarkable year, and “The Immortal Life of Henrietta Lacks” continues to be discussed in UW-Madison classes, local book clubs, and other Madison school and college programs. Students and faculty continue to visit the “Informing Consent” historical exhibit at the Ebling Library (open until March 31st) on the west side of campus. UW’s Go Big Read choice is but one of many highlights of Skloot’s literary trajectory- the Wellcome Trust Book Prize recently chose “Immortal Life” as the book that most celebrated medicine for 2010.

Visit to the “Informing Consent” Exhibit

A Display Case on the history of research at UW-Madison, informed consent, and the McCardle Laboratory for Cancer Research.

Recently a group of students visited the “Informing Consent: Unwitting Subjects in Medicine’s Pursuit of Beneficial Knowledge” exhibit at the Ebling Library for the Health Sciences. Noticing that the students were bent over the display cases, discussing artifacts and items with one another, and taking notes, I asked them if they were there for a class- as generally, twenty students, all in one place, for over an hour, when it is not a social event- is noteworthy.

They were here from Edgewood College, from their class, BIO 402- Cell and Molecular Biology. The students, taught by Fern Murdoch,PhD., had read “The Immortal Life of Henrietta Lacks” at the beginning of the semester and had written a paper about one of the scientific uses of HeLa cells. They were finishing the semester with a paper on the ethics of human tissue use. They found the exhibit to be a great jumping off point for their discussions. Their discussion centered on who owns human cells? Is the good provided by medical research more important that an individual’s claim on their own tissue? A number of students were particularly interested in the development of skin cultures in the Allen-Hoffman lab (which there is a case on in the exhibit) and where those cells came from. Another student brought up the issue of the rights, or lack of rights, of prison inmates to consent to participate in research studies. As Professor Murdoch wrote, “Overall, I think the exhibit contributed significantly to the students’ thinking about the ethics using human tissues in medical research.”

The exhibit continues until the end of March, 2011. If you or your class (or book club) would like a tour of the exhibit, or would like to come on your own time, we invite you to attend! Contact Micaela for more information: