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‘Immortal Life of Henrietta Lacks’ author and family come to Indy

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By now you’ve probably heard of Henrietta Lacks, and that’s only because of Rebecca Skloot. Skloot wrote the book, “The Immortal Life of Henrietta Lacks,” which became an HBO movie of the same name featuring Oprah Winfrey. 

Skloot and members of the Henrietta Lacks family will discuss her story, a Black woman whose cancerous cells were harvested and used without her permission or knowledge for research, at 6 p.m. Oct. 24 at Northview Middle School.

Before the book was published in 2010, it’s likely you never heard of Lacks, but benefitted from her nonetheless. Lacks’ story doesn’t begin with Skloot, but she brings to life the story of a woman, known in the science and medicine communities only as HeLa, the first immortal human cell line.

Lacks died of cervical cancer in 1951. Before she died, however, a doctor took samples of her tumor. Unlike previous human cells, which died, Lacks’ reproduced every 24 hours, and kept producing. HeLa cells have gone into space, been used for cancer research, and used to develop the polio vaccine, drugs to treat herpes, leukemia, Parkinson’s disease, the flu, and the list goes on and on. The problem: Lacks never gave doctors consent to take a sample of her cells and neither did her family. In fact, her husband, David, said he told the doctors at Johns Hopkins Hospital no when asked. And while Lacks’ cells were sold for $25 a vial and written about in numerous scientific and medical articles, her family never received a dime or even knew of the research.

The event is a continuation of Indianapolis Public Library and Indiana Humanities’ “One State/One Story: Frankenstein” initiative celebrating the 200th anniversary of Mary Shelley’s book, “Frankenstein.”

Lacks’ life and death forces Americans to take a deeper look at scientific discovery, informed consent, ethics and racism related to science, Susan Davis, adult program manager, said.

“This idea of consent, what makes you human and how much in control are you of those things that make you human,” Davis said. “It brings into play this idea [of] how much control do you have over that. They’ve built these multi-million dollar corporations — a lot of them based solely on the HeLa genome.

“I am excited that the Lacks family, that two members of their family, will be speaking. She was more than just the HeLa gene. I’m excited that they are allowed to celebrate her life.”

In addition to Skloot, Lacks’ great granddaughter Veronica Robinson and daughter-in-law Shirley Lacks will discuss the family matriarch. Robinson said her grandfather was the oldest child and the only one to remember Lacks. He didn’t talk about his mother or what happened to her, so the family learned about Lacks with the world, she said.

“Her privacy was shared with the world,” said Robinson, who attends Baltimore City Community College to become a registered nurse and eventually a doctor. “Her bathroom door was opened to the world. All of our family’s personal business that we didn’t even have the opportunity to know first hand was now shared with everyone. If you don’t tell people exactly what you’re doing then you’re stealing the most precious thing you could ever take from somebody, and that’s their knowledge and their right to know.”

 

Contact Editor Oseye Boyd at 317-762-7850. Follow her on Twitter @oseye_boyd.

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