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.

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