Tuesday, February 22, 2011

Returning the Favor

After reading the book, The Immortal Life of Henrietta Lacks, many wonder how the descendants of Henrietta are doing today and how will anyone ever repay Henrietta for what her cells have done for science.

The recent The New York Times article, "Returning the Blessings of an Immortal Life", provides more information about Skloot's Henrietta Lacks foundation for the Lackses and about the family. For example, a portion of the foundation has gone towards a high-tech hearing aid for Henrietta's son and braces for her great-granddaughter. The money is also going towards things like books and tuition that the family would otherwise not be able to afford, which is ironic considering Henrietta's cells have led to a multi-million dollar industry. The article goes on to say that an HBO film based on the book is in progress in which Henrietta's three sons have been hired as consultants.

To learn more about the Henrietta Lacks Foundation, the Lackses, and the fascinating HeLa story, click on the above article link.



Jessica Waala
Undergraduate Student

Monday, February 21, 2011

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. msullivan@library.wisc.edu

Photos:
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

Labels: , , ,

Thursday, February 10, 2011

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.

Labels: , , ,

Monday, February 7, 2011

Call for Mock IRB Submissions for Discussion at April 15-16 Capstone Event

This year’s Go Big Read book, The Immortal Life of Henrietta Lacks, raises many intriguing questions regarding ownership of human tissue, race and ethnicity and how these issues play a role in the world of scientific study.

A Go Big Read capstone event, "Who Owns My Body (and Where Is It Now?)," will be held April 15-16 at the Wisconsin Institutes for Discovery. The event will be free and open to all, and will include a variety of panels, discussions, and films. Visit GoBigReadCapstone.org for planning updates.

As part of the capstone event, we would like to present a simulation of how an Institutional Review Board (IRB) discusses and determines the appropriate measures to take in an ethical dilemma within a scientific study. Therefore, we invite students and faculty to participate in this event by submitting scenarios that could be presented to a mock IRB and a public audience, who will partake in a thoughtful discussion to resolve the matter. This is intended to not only give the audience an inside look at how IRBs function, but also allow them the opportunity to think through the issues themselves to see how they might resolve an ethical dilemma. The audience will be given clickers and will be asked to take an active role in the discussions with the mock IRB.

We are hoping that faculty will encourage students to submit ideas or possibly integrate this activity into their class. Students may also submit scenarios independently. The scenarios should be about 250 words and should be submitted by February 25th on line at GoBigReadCapstone.org.

Participants should feel free include interesting or unique methods of presenting their scenarios to the public. For example, they may use posters, movies, student actors, etc. They may also offer a main scenario and include slight variations to test reasoning of the mock IRB and the public as certain elements change. For example, a variation on the main scenario may change the subjects of study from adults to children, it may change the likelihood of risk to the subjects, or the severity of the possible side effects.

After all submissions have been received we will choose a set of scenarios to present to a mock IRB at the Go Big Read capstone event. All students and faculty are invited to participate.

Questions should be directed to Jennifer Gottwald at jennifer@warf.org.

Labels: , , , ,