For this year’s J. Edward Rall Cultural Lecture on Mar. 14, Skloot shared her experiences in researching, working with members of the Lacks family and writing a book, a process that took more than 10 years.
The book, The Immortal Life of Henrietta Lacks, went on to be a New York Times bestseller, to be named Amazon.com’s Book of the Year for 2010 and win a host of other awards and literary prizes. It describes not only the science behind the world’s first immortal cell line (meaning the cells continue to grow and divide given the proper environment), but also the ethics behind using biological material without consent, the commercialization of the cells and the medicines that have been developed with them that have made some companies very wealthy.
Skloot chats with NIH director Dr. Francis Collins on Mar. 14; she gave this year’s J. Edward Rall Cultural Lecture.
Skloot said she reached out to Henrietta Lacks’ children to get material for her book.
Photos: Bill Branson
“Show of hands, how many of you have used HeLa cells in your lab?” Skloot asked a capacity
Masur Auditorium audience. Nearly half the audience raised their hands.
“One of the most common statements that I get when scientists learn about where HeLa comes from is ‘I never knew,’” she said.
It was because of that mystery that Skloot got interested in learning about the cells, where they came from and why nobody talked about the person whose cells were behind so many medical discoveries. She first heard of the cell line when she was a 16-year-old high school student,
taking a biology class at a community college.
The name “Henrietta Lacks” was scrawled on a chalkboard, discussed for perhaps a minute at the end of a class and then summarily erased from the board. Skloot was intrigued.
Fast-forward years later and Skloot had completed
a B.S. in biology and gone on to graduate work that found her elbow-deep in learning and writing about science. She returned to the mystery
Her early efforts to talk with Henrietta’s children
and family weren’t especially successful. Countless others had come before her, never really explaining how important the cells were to science or how tiny pieces of their mother were actually still alive. Skloot described the first time she ever spoke with Deborah, Henrietta’s
youngest daughter, about her mother.
“At first she was ecstatic. She said, ‘This way I can learn about my mother.’ She threw out little bits of her story, but then she panicked and hung up on me,” said Skloot, who said the very action of reaching out to a family that didn’t fully understand what cells were made her question how she was going to move forward.
“I didn’t know where my entry fit into the narrative.”
The Lacks family, though curious about Henrietta’s
legacy, had grown to distrust outsiders
who always seemed to want something, but never explained the science or what these cells meant to the research community.
“I have never met anyone who wanted to learn as badly as Deborah did,” Skloot said. “That got the best of her. She realized she wanted to learn more than she was scared of me.”
So Skloot started sharing with Deborah everything
she found out about her mother as she learned it, from medical information and the reason why Henrietta died, to why the cell sample
was taken and what those remarkable cells had gone on to become. Deborah shared her mother’s journal with Skloot and often accompanied
her to the library or to labs.
“‘You can’t hide anything from me, you have to tell me everything,’” Skloot recalled Deborah saying to her. “That was the only qualification she ever put on anything I did.”
What the project became was an all-encompassing
look at the scientific breakthroughs that came as a result of work with the cells and a full accounting of the ethical fallout posed by the pre-regulation 1950s practice of taking cells for research without consent, the eventual mass production of that material (which made some companies rich) and the poverty that Henrietta’s
family still lives in—and makes them unable to go to a doctor.
Skloot said she found herself hoping that writing
a book about the cells and the woman behind them wouldn’t make matters worse for the family. So, with proceeds from her book, she began the Henrietta Lacks Foundation. It offers medical and tuition help not only to Henrietta’s
descendants, but to any patients or family members of patients who have been critical to breakthroughs in science because of biological material taken without their knowledge.