This past week and weekend was a busy one for book lovers in Augusta. Last Thursday night kicked off the 6th Annual Writers Weekend, which is sponsored by the Department of English and Foreign Languages at Augusta University, and “features award-winning authors and teachers who will lead workshops and share their original creative nonfiction, fiction, and poetry. This unique opportunity enables readers and writers from a variety of backgrounds to connect, collaborate, and create.” (Source: Literaryaugusta.com). Not only was Thursday night the kickoff event for Writers Weekend but it was also the culmination of various events held throughout Augusta to build excitement for the keynote speaker Rebecca Skloot, author of The Immortal Life of Henrietta Lacks. A movie screening of the HBO movie based on the book was shown at Augusta University and the Columbia County Library back in January and Rebecca Skloot and two members of the Lacks family came to town this past week to participate in panels, meet-and-greets, and Q & A sessions at the Columbia County Library, Paine College, and the Imperial Theater.
Rebecca Skloot is the author of The Immortal Life of Henrietta Lacks which was published in 2010 and it took her 10 years to write this book- mostly because she took the time to respect and get to know the various members of the Lacks family. The book is about an African American woman who died in the 1950s from cervical cancer, but her cancer cells (called HeLa cells) lived on and multiplied which had never happened in a lab before. Researchers around the world soon used her cells to study and cure various diseases (polio, for example) and create vaccines. Her cells journeyed to outer space where astronauts could study the effect of space travel on human cells.
I remember the buzz when the book was released and put it on my To-Be-Read list but for some reason I never got around to reading the book. Well now that Rebecca Skloot was coming to town it was the perfect opportunity. I attended one of the movie screenings and “A Conversation with Rebecca Skloot and Henrietta Lacks’s Family” at the Imperial Theater. Victoria Baptiste (Henrietta’s great-granddaughter) and Shirley Lacks (Henrietta’s daughter-in-law) participated in a panel with Rebecca Skloot that was moderated by local attorney Laverne Lewis Gaskins.
One of the first questions that Ms. Gaskins asked of Victoria Baptiste and Shirley Lacks was to describe Henrietta to the audience. They described Henrietta as a wonderful, giving person who loved people and loved to feed them too! Henrietta also loved to dance, to look good all the time, and she loved to wear red toenail polish. Despite the poverty of the Lacks family she made do with what little she had. Then Ms. Gaskins asked the ladies about Deborah Lacks. Deborah was Henrietta’s daughter and the essential link that Rebecca Skloot needed to find out more about Henrietta and the HeLa cells. Ms. Baptiste and Ms. Lacks described Deborah as witty, loving, a jokester, and spiritual, yet, always yearning to know more about her mom.
Rebecca Skloot first heard about HeLa cells in her school biology class in 1988. The teacher told the class that the HeLa cells were named for Henrietta Lacks and that these cells had never stopped growing and were responsible for much of the medical breakthroughs in the twentieth century. This intrigued Ms. Skloot and after class she asked the biology teacher for more information, but the teacher said there was no more information known about the woman. When she was in college, Ms. Skloot took a General Ed class and one of her assignments was to write about something the world forgot, so she wrote about HeLa cells. While conducting research for this writing assignment Ms. Skloot found out that the HeLa cells were originally attributed to a fake name to give the Lacks family privacy. While Ms. Skloot was in grad school she continued her research on the HeLa cells which led her to make her first phone call to Deborah Lacks in 1999. Deborah was excited yet distrustful of this white lady that wanted to write about her mother, so she kept Ms. Skloot at arm’s length (Deborah and her family had been burned before by other people claiming to write about Henrietta and the HeLa cells). Ms. Skloot originally thought her research and book would just be about Henrietta but the more she found out about how the family was treated (or not treated) by the medical community, the more she realized that her book would be about the whole Lacks family. To gain Deborah’s trust, Ms. Skloot interviewed extended members of the Lacks clan and would tell the stories and tidbits of information about Henrietta through messages left on Deborah’s answering machine. Ms. Skloot told the audience that she had no journalism background when conducting this research, so she had no preconceived ideas or training about conducting interviews or journalistic research methods. Ms. Skloot said that journalists usually only ask questions and don’t allow their sources to ask questions of them; Ms. Skloot did the opposite and the Lacks family slowly learned to trust her.
So right now you’re probably wondering what the big deal is about these HeLa cells and why was the Lacks family so distrustful of journalists? Henrietta’s biopsy was conducted before informed consent was standard in medical procedures. The doctors at John Hopkins used Henrietta’s cells in research without her knowledge or permission and the surviving family members were never notified or asked for consent either. The Lacks family also was never financially compensated even though their matriarch’s cells saved and improved millions of lives around the globe. John Hopkins researchers contacted the Lacks family in the 1970s and conducted more tests and took more tissue samples without being fully honest about what they were researching and how the test and tissues samples and results were going to be used. (At the panel Ms. Skloot told the audience that informed consent laws were established by the 1970s but not codified at the time that John Hopkins researchers were collecting samples from the Lacks family).
During the panel Ms. Baptiste and Ms. Lacks stressed the importance and ethics of informed consent about cell and tissue research in the medical community: “If you have to ask me permission to use, then you know it belongs to me” (Ms. Baptiste) and “If I’m alive, then you need permission because it’s part of me and belongs to me” (Ms. Lacks).
Racial disparities and attitudes in healthcare were also discussed at the panel. In the 1950s racial segregation in Baltimore determined where Henrietta could seek out and receive medical care. John Hopkins was the only hospital in the area that accepted poor, African American patients. Ms. Baptiste and Ms. Lacks also suspect that race played a part in Henrietta’s pain management while she in John Hopkins recovering from surgery and radiation treatments. Ms. Baptiste currently works in the medical field and sees discrimination against patients of color almost daily. She told the audience, “You can’t change the mentality of people despite protocols and regulations.” (When I was in the book signing line, a lady in front of me told Ms. Baptiste that her Haitian husband is treated differently than she is whenever he goes to a medical appointment and this woman suspects this differential treatment is because of the color of his skin and his accent).Ms. Skloot admitted to the audience that she grew up in the racially-sheltered Pacific Northwest; she thought racism was gone in this country and she didn’t experience the realities of race until working with the Lacks family. She was told, “You’re going to get access to things a black writer wouldn’t.” She still didn’t believe this until she questioned an older white doctor who had conducted testing on the Lacks family and referred to them as “those people.”
John Hopkins has not formally apologized to the Lacks family- according to the hospital lawyers it would be an admission of guilt. John Hopkins does honor Henrietta Lacks every year and Shirley Lacks’ husband told her that it “warms my heart to see these people learn about and acknowledge my mom.” In 2013, there was more controversy when German scientists sequenced the genome of HeLa cells and released the genetic information online. Some of the Lacks family was concerned that their genetic information would be viewable by the public while other family members were curious and hopeful that sequencing the HeLa genome could benefit the world.
|Ms. Skloot told me she loved my tabs; I then told her, "Well, you're going to love where my cat chewed the corner of your book because he was mad that I wasn't feeding him."|
On a semi-lighter note…
Actress Karyn Parsons headlined the opening session of the Writers Weekend event on Saturday. (Karyn Parsons played Hilary Banks on The Fresh Prince of Bel Air TV show). Ms. Parsons was invited to Writers Weekend to promote her non-profit company Sweet Blackberry. The idea for Sweet Blackberry began when Ms. Parsons was pregnant with her first child and realized that she would need to supplement her daughter’s education regarding African American contributions to the world. The same stories are taught over and over, and schools don’t have the resources to update or supplement their materials. Ms. Parsons admitted to the audience that she hated history as a kid; it was presented as a series of dates in a very abstract way and not as a series of stories that were relatable to her. Sweet Blackberry aims to change that by presenting children with stories of historical figures on their level. Right now, these stories are presented as short films that can be purchased through the Sweet Blackberry website or viewed on Netflix. Film narrations have been provided by Alfre Woodard, Queen Latifah, and Chris Rock (with Laurence Fishburne narrating on an upcoming film on Bessie Coleman!). Future goals for the organization include book publishing, TV series, apps, an interactive kids’ section on the website, and the website itself as a resource for African American historical figures.
The second session I attended at Writers Weekend was “A Reading with Tony Grooms” who read “Uncle Beasley’s Courtship” from his short story collection Trouble No More (also available through the Kennesaw Digital Commons) and three passages from his new novel The Vain Conversation. Mr. Grooms’ novel was in the works for 25 years (!!) and was inspired by a 1991 AJC article about the 1946 Moore’s Ford, double lynching in Walton County (you can read a recent update here: http://www.myajc.com/news/state--regional/moore-ford-lynching-years-long-probe-yields-suspects-but-justice/J5QYgAcuQoTIRta5AVeS5L/). Mr. Grooms told the audience that his novel is a story that asks questions about redemption and is an analogy about race relations in the US (“there has been no closure”).