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Monday, October 25, 2010

Live Blogging: Question and Answer session with Rebecca Skloot

Chancellor Biddy Martin begins the question and answer session with one of her own by asking Skloot about the point of view of her book. Skloot emphasizes that she tried to be objective while writing the book, though it was difficult. In the book's writing she attempted not to demonize the scientists, yet represent the views and concerns of the family. Skloot states, however, that many readers do see a clear point of view in her book.

The first audience question deals with Skloot's decision to include herself in the narrative and the effects that had on her relationship with the family and the development of the book. Originally, Skloot did not plan to include herself in the narrative, and is generally skeptical of doing so. However, she found that many of her very personal experiences with the family, particularly with Henrietta's daughter Deborah, truly were essential to the narrative. Skloot realized that she was a character in the narrative as a person who both wanted something from the family and provided them with experiences they needed. In her answer Skloot also addresses the issue of a white writer attempting to tell the story of a black woman and her family. She stresses that she attempted to advocate for the family, and was always conscious of her presence as an outsider. However, Deborah saw her mother's story as one of social class, not race, and perhaps saw Skloot's race as less of an impediment to her ability to share the Lacks family story that Skloot herself.

The second question deals with the ethics of ethnography. Did Skloot ever feel that her ethics were ever compromised? Skloot states that from the beginning she was very open with the family and concerned with obtaining their consent and providing them with information. She began with the family by trying to lay out all of the possibilities of their interviews - Would the book be published? Who would the audience be? Would it be popular? What does it mean to be written about? Skloot also emphasizes she continually reminded Deborah that she was a reporter, not simply a friend she was sharing family stories with.

The next question addresses the controversy present in the book. Did Skloot write this book with the intent to expose the controversial aspects of medical research? Skloot began writing the book with knowledge of a general mistrust of medical research in the African American community. Skloot wanted to discover what role race did play in this story to be able to build better relationships today between communities and scientists. Skloot acknowledges that the lack of medical research conducted on minorities leads to a gap in medical knowledge about these communities, and potentially impacts their health care.

The next question addresses the beginning of "The Immortal Life Henrietta Lacks." She prefaces her book with a quote from Elie Weisel: "We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph." Skloot sought to put a face both on the human cells and tissues that we use in research, as well as the unknown scientists involved in the research, making monumental decisions.

Skloot was also asked: What is your prediction about tissue ownership? In general, Skloot believes that the public understands the importance of donating to research. They simply want to be asked before the research is conducted, rather than finding out about the research after their tissue has been taken and used. Skloot predicts that uniform consent will be required for tissue research; some people will not give consent, but most will.

The next question concerned Skloot's own view of informed consent. Did your view of informed consent change in writing the book? Skloot found that her view did not really change, aside from gaining an understanding of the complexity of the issue. A great amount of education is required to understand the concepts involved in giving informed consent.

The audience also wanted to know if the promise of cell culture was overblown. Skloot states that the promise of cell culture definitely was overblown, which was largely contributed to by the media. As a science writer, Skloot understands that scientific topics are difficult to write about for the general public. She emphasizes that this ability for scientists to communicate their ideas to the general public is extremely important.

Skloot was asked what advice she has for aspiring journalists. Skloot states that what truly separates journalists from other writers is curiosity - the ability to seek out interesting stories, and then communicate them intelligently to an audience. The ability to be curious, follow your curiosity and see connections are essential to a good journalist according to Skloot.

An aspiring journalist also asked if Skloot was every discouraged in writing her book. Skloot believes that her own "hard-headed" quality drove her to finish the book over ten years. She also found Deborah and the curiosity of others to be motivational.

Finally, did any members of the Lacks family ever express regret over their involvement with the book? Deborah, Henrietta's daughter, was the only one to truly be invested in the book. Before publication, Skloot sent copies of the manuscript to Henrietta's family. She found that many of the younger generation were truly shocked and awed by Henrietta's family, and grateful to have the book written. Some members of the younger generation also read the book out loud to their elders, which opened a dialogue in the family. Skloot also mentions that Henrietta's family sometimes shows up at her speaking events, and even signs books, making them seem pretty comfortable with the experience. The family is also involved as consultants in the film to be made from the book.

Skloot was also asked about the Henrietta Lacks Foundation, which was set up as an education fund. This came from Deborah's feeling that much of her fear and anxiety about the issue stemmed from her lack of education.

Skloot ended the session by speaking about her current interests. She is still very absorbed in "The Immortal Life of Henrietta Lacks" and continuing to speak at various locations about the book. She is also working on a young adult (ages 10-12) version of the book, partly as a way to promote science to young women.

Live Blogging: Rebecca Skloot at the Kohl Center

Chancellor Biddy Martin introduced the event and the author by outlining the great impact this year's Go Big Read book has had on our campus. Over 5,000 students received copies of the book at the Freshman Convocation, over 80 different classes on campus are using the book this semester, and many speaking events and book discussions have been organized, not the least of which we look forward to tonight.

Rebecca Skloot begins her speaking event by thanking the audience for attending the lecture, and conveying her sense of awe and thanks to her readers. She tells the audience that her kind of writing is "creative non-fiction," which she describes as non-fiction writing that is "all true and journalistically accurate, but reads creatively." She notes that this can sometimes be confusing, in that her book recounts dialogue from the 1950s, even though Skloot herself was not in the room as a witness. She states that she has painstakingly reconstructed the dialogue that appears in her book via interviews and historical documents, using very little (if any) creative license.

Skloot recounts for the audience an except from her book, when Henrietta first discovers what she has expected for a long time, a "knot on her womb." Her husband took her to Johns Hopkins hospital, the nearest hospital that would treat African Americans during the Jim Crow era. The examining gynecologist discovers a tumor, which is biopsied, that has likely grown extremely rapidly over the previous 3 months. He then shares the samples with another doctor at the hospital, George Gey, who proceeds to make them into the most famous - the first immortal - cells in the world.

In 1951 it was common for doctors to take tissue samples from patients without their consent. At the time, scientists had no concept of DNA, and had no idea how much personal information was contained within those cells. To this day, scientists still do not understand what makes HeLa cells so virulent. Henrietta died within 8 months of the tissue samples being taken.

The advances made possible by Henrietta's cells are numerous: the polio vaccine, the effects of space space travel on human cells, the first cloned cells, the first genes to be mapped, numerous cancer medications, and the HPV vaccine. But Henrietta's family did not understand these concepts. They initially felt that her cells must be related to Henrietta's peace after death, her afterlife. Her family worried that the experiments being done with her cells might be causing her pain.

Rebecca Skloot became involved with the family in the 1990s. Skloot traces her interest in Henrietta's story back to her own experience with her father undergoing treatment for a viral infection via clinical trials. Only through persistence in sharing her own experiences and information was she able to gain the trust of Henrietta's family.

Skloot recounts for the audience one last scene from her book that demonstrates her effort to share information with the family. Skloot arranges for Zakariyya and Deborah, two of Henrietta's children, to visit the lab of a scientist working with HeLa cells. Only through openness and an effort to share information with the family was Skloot able to truly reach them, bond with them, and tell their story.

Friday, October 22, 2010

Rebecca Skloot at UW October 25th - Monday!

Monday night at the Kohl Center, we'll be hosting Rebecca Skloot, author of The Immortal Life of Henrietta Lacks.

Doors open at 6 p.m. and the event starts promptly at 7 p.m. with welcoming remarks from Chancellor Martin, followed by Rebecca Skloot's talk. Questions for Rebecca Skloot will be selected in advance from the pool submitted via the blog.

All are welcome and no tickets are required. We hope to welcome many students, staff, faculty and instructors, and community members. Sign-language interpreters and live captioning have been arranged.

Thursday, October 21, 2010

Guatemalan Prisoners Infected with Syphilis

In 1946, hundreds of Guatemalan prisoners were infected with syphilis by American doctors in order to test penicillin.

A few important things to note about the Guatemalan Sphyilis Experiment include:
> Dr. John Charles Cutler, from the Tuskegee Syphilis Experiment in the US, had a major role;

> A major difference between Tuskegee Syphilis Experiment and the Guatemalan Spyhilis Experiment is that the Guatemalan prisoners were purposely infected;

> The National Institute of Health (NIH) paid syphilis-carrying prostitutes to infect the prisoners who were involved in the study; if the prostitutes could not infect the prisoners, open sores were created and the infection was administered;

> Both experiments were carried out to test the ability of penicillin.

In the mid-twentieth century, there were very a few ethical and legal regulations about performing experiments and taking samples from patients by today’s standards. The treatment of people like the prisoners from Guatemala and Henrietta Lacks’s story is deplorable and extremely unethical. However, their situations did force organizations and governments to step up and make sure participants in the future would be safe.

For more information about the Guatemalan Syphilis Experiment, check out the New York Times article from October 1, 2010.

Wednesday, October 20, 2010

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.

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.Read more »

Tuesday, October 19, 2010

WUD Film Presents "Adventures in Bioethics" Double Feature Friday!

Friday, October 22nd at the Memorial Union Play Circle, WUD Film will present a FREE Go Big Read Adventures in Bioethics Double Feature:

7 pm Gattaca

9:30 pm Frankenstin (1931)

The event is sponsored by the Wisconsin Union Directorate Student Programming Board and the WUD Film Committee. Union events are intended for UW students, staff, faculty, and Union members and their guests only. (small print from the event poster). For more information visit http://www.union.wisc.edu/film

Sounds like fun! We're also looking for recommendations of other movies (or other media) that would align with and highlight themes in the book. If you have ideas, please submit them as comments.

Monday, October 18, 2010

Suggest a Question for Rebecca Skloot's October 25th Lecture at the Kohl Center

Rebecca Skloot's October 25th lecture at the Kohl Center is free and open to the public. The event will begin at 7 pm (doors open at 6 pm) and no tickets are required. We hope you'll attend and invite anyone you know who might be interested. We'll post more details on the web site soon!

Due to the large scale of the Kohl Center event, the question and answer period will be moderated. Questions should be suggested in writing by October 18th. The moderator will select a representative set of questions and ask them of Rebecca Skloot at the event.

If you would like to suggest a question, please post it as a comment to this blog post. Please also consider including your name and some very brief information about yourself.

Please note that blog posts are moderated so there may be a delay of up to 24 hours between submitting your question and seeing it appear on the blog.

Course Spotlight: Integrated Health 428

I'd like to share a little about how we've been using the book in my class, Inter-HE 428: Program Planning in Family and Consumer Education, because it's been an exciting and somewhat unexpected experience. This course is about educational program planning for students who will work in various formal and informal educational settings (some will be K-12 teachers, but many of them are Nonprofit and Community Leadership majors), and is taught online. For each lesson, they participate in a Discussion Forum online and I've used the book to connect and apply key course concepts to aspects and themes of the book. So far in the course, students have discussed: 1. the examples of formal and informal education present in the book,2. the various roles as learners and educators individuals in the book take on,3. models of educational program planning that may be applied to patient/research participant education in health and science, and building from that discussion,4. the core program content that would be important to such patient/research participant education.The students really enjoy the book and see the story and the Go Big Read program itself as good examples of the potential of less formal educational approaches to generate powerful learning.Amy Hilgendorf Doctoral Candidate and Instructor School of Human Ecology

Course Spotlight: Engineering Professional Development 155

"In the chapter, Illegal, Immoral, and Deplorable, it talks about a virologist named Dr. Chester Southam, and his use of the HeLa cells in testing for cancer. Southam was concerned that use of the HeLa cells could cause cancer. The book says, “…some rats grew tumors when injected…” And the scientists who used them were exposed to them at all times, “Researchers were in the air around the HeLa cells, touching them, even eating lunch at the tables beside them,” the book explains. So with this problem Southam started to inject people with the HeLa cells without there consent, and observe what happened. He injected patients who already had cancer at first, and then moved on to healthy humans. He found that the healthy humans rejected the cells much faster than subjects who already had cancer. With this fact, Southam “checked” people for cancer. The book says, “Southam thought that by timing the rejections rate, he might be able to find undiagnosed cases of cancer.” All of this testing came to an abrupt stop when three Jewish doctors refused to inject patients without the patients consent. They claimed that this was the same thing the Nazis did to their ancestors; they were following the Nuremberg Code. The Nuremberg Code states, the voluntary consent of the human subject is absolutely essential. When they three doctors resigned because of this incident, it caused suspicion and an investigation was done on Southam. When it was all said and done Southam’s license was suspended for a year.

Thursday, October 14, 2010

Course Spotlight: Engineering Professional Development 155

"In the chapter “Illegal, Immoral and Deplorable” Rebecca Skloot points out many of the secrets that were kept during the growth and research of the HeLa cells. Dr. Chester Southam, a cancer researcher, proposed the thought, what if Henrietta’s cancer cells could infect the scientists working on them. He tested this theory using HeLa cells and injecting them into patients that were diagnosed with cancer and recorded the results. Southam simply told the patients that he was testing their immune systems. Within hours the patient’s arms were red and swollen, and days later nodules began to grow near the injection site. He removed some of the lumps to determine if they were cancerous, but also left a few to see if immune systems would reject them or if it would spread. He also injected prisoners to better understand how the cancer cells affected healthy people. The inmates showed the same symptoms, but the men fought off the cancer completely, and with each new injection their bodies responded faster, so the injections were creating immunity to cancer.

Tuesday, October 12, 2010

History 900 Responds to the Immortal Life of Henrietta Lacks

We are a seminar of graduate students in US history, mostly in our first semester. Because we are preparing to be professional historians, we may have read this book differently than other audiences. In our discussion, we focused less on the aspect of professional ethics in science and more time exploring how Skloot told her story, placing the story of the Lacks family within the broader context of the history of science. We almost never agreed in our response to any particular question, so here we present a range of our responses rather than our singular ‘take’ on the book. We hope that others will find the issues we raise to be of interest.While Skloot focuses her attention on the issue of professional ethics in science, we spent a lot of time discussing her own professional ethics as an author and, more specifically whether she should be held to the standards of a journalist, a historian, or an altogether separate standard.This question is complicated by the fact that her day to day profession is somewhat of a hybrid.She has worked as a journalist for a wide variety of magazines. Her book describes her as a “science writer” who has taught “non-fiction in the creative writing departments” at several universities and as a blogger. There was a discussion of how Skloot’s background as a science writer left her somewhat unprepared for the challenges of writing about issues pertaining to race and class. “How well,” several of us asked, “did she handle her responsibility to the Lacks family both during the research process and in the writing of the book?” Read more »

Friday, October 8, 2010

"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

Discussion at Madison Public Library-- Central Library on Tues. 10/12

Anyone who's read the book and interested in discussing it is welcome to join Madison Public Library's discussion at Central Library on Tuesday October 12th at 7 p.m. This group is an established bookgroup known for having engaging discussions. We're also quite welcoming to newcomers. And we have homemade treats!

We'll meet at Central Library, 201 W. Mifflin St. Madison in the Madison Room on the 2nd floor.

Another Kudo for UW's Go Big Read Selection

"The Immortal Life of Henrietta Lacks," is garnering praise internationally. The Wellcome Trust in London has put Skloot's book on their short list of works of fiction and non-fiction on the theme of health, illness or medicine.There is an enormous amount of excitement building over this book, we certainly hope you can join us for Skloot's visit at the Kohl Center on Monday, Oct. 25th at 7:00.

Wednesday, October 6, 2010

Course Spotlight: Engineering Professional Development 155

The EPD 155 class is part of the Com A requirements and is attended primarily by students who are considering careers in one of the STEM disciplines. The class begins with a chapter from Henry Petroski’s book The Role of Failure in Successful Design (1985) to expand our understanding of how engineers use hypothesis and the scientific approach in planning and design. The class continues to explore current issues in technology including the use of social media, alternative sources of energy, stem cell development and of course cell tissue experimentation and use as described by Skloot. The first issue was to understand Henrietta Lacks and George Gey in their historical setting, which meant touching on the issues of Jim Crow laws, and northern migration patterns referenced in the book. While we looked at how Lacks was positioned without power to question authority, I also wanted the class to consider the traits that made George Gey a successful researcher, who in his time thought he was acting ethically. In many ways Gey’s characteristic are the same that the students will need to develop.

Next we focused on the ethical issues raised by Dr. Southam’s research. This lead to a discussion of the Tuskegee Syphilis Experiment, as well as Stanly Milgram’s experiment in Obedience to Authority, which we begin to frame using the Nuremberg Code and tutorials required for human subject research. A number of students became interested in bio/ethics and decided to do more research on the topic. All the students were required to write a reflection/reaction paper after each reading where they summed up the material and then ventured their opinion. For the most part the students were glad the book was chosen.

Friday, October 1, 2010

Read On Wisconsin!

Jessica Doyle has chosen The Immortal Life of Henrietta Lacks as her October Read on Wisconsin book for high school students. Check out her website for more information about HeLa and her other book choices for readers of all ages.