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. email@example.com
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
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.
UW’s West Side Campus, which includes many health science centric institutions and schools, like the UW Hospital and Clinics, the Ebling Library for the Health Sciences, the Waisman Center, and the Schools of Medicine and Public Health (SMPH), Pharmacy, Veterinary Medicine and Nursing, are particularly interested in reading and discussing the “The Immortal Life of Henrietta Lacks.” Skloot’s themes, such as ownership of bodily parts and tissue, the inclusion and necessary protection of human subjects, the place of the HeLa cell in research, the ethics of informed consent, and the question of racial equity in research protocols are all themes which our colleagues must grapple with on a routine basis. A group of instructors and administrators called the Interprofessional Health Education Committee (IHEC) have envisioned a Go Big Read-Health Sciences Program that will include hundreds of health sciences students in one hour sessions with a facilitator who starts the discussion with one of three over-arching themes; Science and Society, Race and Culture, and Ethics (in Research). Facilitators will raise questions within each of these broader themes, such as, “As a future health professional what message will you take from this book?” or “Who is entitled to profit from the distribution of cells?” IHEC plans for students from each of the four schools to discuss these topics together, each of them bringing sensibilities from the health science discipline and life experiences that they differ in, as well as have in common. SMPH’s Curriculum Manager, Renie Schapiro, and colleagues from the four health sciences schools, including the Department of Medical History & Bioethics, are organizing 25-40 facilitators who will lead nearly 800 students in 40 sessions over a 3 week period. This gargantuan effort is being overseen by Jeanine Mount, PH. D., RP H, Christine Seibert, M.D., Chris Olsen, DVM, PH.D., and Nadine Nehls, PH.D., RN., with the organizational prowess of History of Science graduate student Lynnette Regouby and the enviable OASIS calendaring system. For information on the Facilitator’s Discussion Guide, please contact: firstname.lastname@example.org