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Tag: ethics

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.

A Response from Damon Williams, Vice-Provost for Diversity and Climate

I was delighted when I learned that the Go Big Read committee had chosen The Immortal Life of Henrietta Lacks as our second common read selection. I can think of few books that offer our campus community an opportunity to consider diversity along so many lines. Rebecca Skloot’s book invites a discussion not only of issues of race and ethnicity, but also of gender and socio-economic status. As the UW System moves to create a much broader definition of diversity, this book is a wonderful vehicle for students to consider the multi-layered nature of identity and to think about how our experiences can be shaped by the intersection of several kinds of discrimination simultaneously.

In addition to the ethical issues raised in Skloot’s rich narrative, her methodology has served as an equally important springboard for conversations about the relationship between researchers and the populations that they study. I was intrigued by Professor Nan Enstad’s synopsis of the dialogue that her History 900 seminar students had concerning Skloot’s interactions with the Lacks family (http://blog.gobigread.wisc.edu/2010/10/history-900-responds-to-immortal-life.html ). As I read the book I was aware, as were Professor Enstad’s students, of the tensions between the importance of giving voice to Henrietta Lacks and her descendants and the means necessary to do that. Without going so far as to weigh in on Skloot’s methods, which would involve making judgments outside of my own disciplinary area of expertise , I do think that the book serves as an excellent tool for exploring the responsibilities involved in any project involving human subjects, especially when working with our most vulnerable populations.

I am looking forward to next Monday’s author visit and am equally excited about the broad array of opportunities to “sift and winnow” through the many issues raised in the book during the course of this academic year. I was pleased to include a panel discussion of the book, led by Professors Dayle B. Delancey and Susan E. Lederer of the Department of the History of Science, at this year’s Diversity Forum. In addition, my office is co-sponsoring a lecture on some of the issues raised in the book by Professor Henry Louis Gates, Jr. in March 2011. I strongly encourage anybody who is interested in diversity, and especially in issues of diversity and research ethics, to read this fascinating book and to engage in one of the many upcoming opportunities to discuss it with other members of the university community.

Integrating Research Ethics and Scholarship (IRES)

Integrating Research Ethics and Scholarship (IRES) is an initiative, sponsored by the Graduate School, that offers novice and seasoned researchers and scholars educational opportunities and resources that reflect best practices in ethics education and scholarly integrity. The kick-off event is November 4, 2010. A second symposium will be held on January 27, 2011.

Fall 2010 Research Ethics Symposium

The Integrating Research Ethics and Scholarship (IRES) Program invites you to the Fall Research Ethics Symposium on November 4, 2010. The morning session is specifically designed for graduate students and postdoctoral researchers and utilizes themes from the 2010 Go Big Read selection, The Immortal Life of Henrietta Lacks. Breakout discussion sessions are facilitated by distinguished campus experts.

Registration is required for the morning event. Please note, if you would like to attend the evening panel, separate registration is required for the morning and evening sessions.

Fall Research Ethics Evening Panel Discussion

The evening session is a panel discussion focused on research oversight at UW-Madison and will be of great interest to many people. This event is open to the public.

Registration is required for the evening event.

Questions? Please email ires@grad.wisc.edu.

Contact Heather McFadden

Heather McFadden
Research Compliance
The Graduate School

“Informing Consent” Opens to Enthusiastic Reviews

The Ebling Library for the Health Sciences on UW’s West Campus recently opened an exhibit entitled “Informing Consent: Unwitting Subjects in Medicine’s Pursuit of Beneficial Knowledge” in conjunction with “The Immortal Life of Henrietta Lacks.”

Artifacts, books, journals, photographs and magazines from Ebling and five other campus collection create narratives in cases entitled, Honoring Henrietta, The Science of HeLa, UW Cancer Research (McCardle), Patenting Life, Immortal Skin (the story of UW’s Dr. Allen-Hoffman), HeLa in the Press, The Art of Healing, Human Subject Experimentation in our Own Backyard, Informing Consent, and Captive Subjects-Is There Such a Thing as Voluntary?
Students, faculty, historians and family were heard to exclaim, “Great information- way to put the Skloot book in perspective, “Impressive amount of thoughtful work,” “Thanks so much for helping me to better understand [these subjects].”

The exhibit in the 3rd floor Historical Reading Room, is open the hours the same hours as those of Ebling until March 31, 2011. Curators, Micaela Sullivan-Fowler and History of Science Graduate Student, Lynnette Regouby are available to give tours for classes, book clubs, etc. msullivan@library.wisc.edu

And finally, this site may be of interest.

Photos by Micaela Sullivan-Fowler

Diversity Forum to Feature Go Big Read Panel

The 2010 Campus Diversity Forum, “Cultivating Excellence: Nurturing the Seeds of Success” will take place Thursday, September 30, from 8 am-4 pm at the Memorial Union. The event is free and open to the public. Registration for the lunch keynote is now closed, but you can still register for other events.

The Forum will include a Go Big Read Panel Discussion on The Immortal Life of Henrietta Lacks from 1:15-2:30 in the Class of ’24 Reception Room, 4th Floor, Memorial Union. Professor Dayle B. DeLancey, Assistant Professor, Department of Medical History and Bioethics and Professor Susan E. Lederer, Chair, Department of Medical History and Bioethics will lead the session.

Rebecca Skloot’s The Immortal Life of Henrietta Lacks shows readers how one woman’s experience with medicine has exposed issues of race and culture and highlighted ethical and legal dilemmas. In this joint presentation, two historians of medicine explore these overlapping issues and dilemmas. Professor Sue Lederer reconstructs the racial and cultural background of Henrietta Lacks’ case, while Assistant Professor Dayle B. DeLancey examines the case in ethical and legal context. The Immortal Life of Henrietta Lacks is the 2009-10 selection for Go Big Read (http://www.gobigread.wisc.edu), UW-Madison’s common reading program.

Participants who have not yet read the book but are interested in joining the conversation are very welcome, as are those who are more familiar with the material.

Hope you can join us!

Sarah McDaniel
Go Big Read & UW Libraries