If it were possible, would the family of Henrietta Lacks alter history and deny scientists her miracle cells – the first lab-cultured cells that made possible the polio vaccine, genetic mapping and countless other scientific breakthroughs? Even in hindsight, ‘No,’ they said at last Thursday’s Common Reading Program keynote lecture – not since the experiments using her cells resulted in saving so many lives.
HeLa, as scientists referred to the cells, has been reproduced and sold by the billions all around the world. Taken in 1951 from a poor black tobacco farmer without her knowledge, HeLa became one of the most important tools in modern medicine while Henrietta Lacks and her family were unable to afford health care. Very few, including the Lacks family, knew who was the person behind HeLa until Henrietta’s identity was released 20 years later; and, still today, hardly anything was known about Henrietta until the 2010 release of Rebecca Skloot’s best-selling book, “The Immortal Life of Henrietta Lacks,” which raises the issues of exploitation and ethics in scientific experimentation.
“The HeLa is her legacy – something that gives and keeps on giving. Probably everybody’s affected in this room,” David “Sonny” Lacks, Jr. said at Thursday’s lecture at RWU. “But it’s a good feeling for someone to come up to you and say, ‘Your mother saved my life.’ Her cells are still living and still going on helping – I’m proud.”
“I feel as though my grandmother was put here to be an angel for so many people,” added Ron Lacks, Henrietta’s grandson.
Provost Andrew Workman and Assistant Professor of Journalism Paola Prado interviewed Sonny and Ron about the family’s legacy and the impact of Skloot’s book – a departure from the usual tradition of bringing the author of the Common Reading selection to campus for the keynote presentation.
On the topic of Skloot’s book, the Lackses had areas where they agreed and disagreed. Both Sonny and Ron said they are speaking with audiences around the country, in part, to correct some inaccurate portrayals of Henrietta and the family depicted in the book. Sonny attributed that to the book having mostly one person’s perspective – that of his sister Deborah, who was too young to learn much about her mother before Henrietta died. Ron thinks there should have been a richer and more meaningful depiction of the family members: “I had a good upbringing, good memories. She [Skloot] didn’t paint a really happy family.”
But the book still got the job done, according to Sonny. “It brought the story that my sister, Deborah, wanted to get out. Even to me, I think the book got the story out like she would have wanted it to get out.”
Four years old when his mother died, Sonny only has the stories told to him by his older relatives. “They tells [sic] me that she was a giving person, a person who cared,” Sonny says.
As for whether it was ethical for scientists to have taken Henrietta’s cells without her knowledge, Sonny said: “I think it was wrong for them to take her cells without her consent. Back in those days it wasn’t always and a black and white issue, it was a poor issue. But at least Johns Hopkins (Hospital) could have told, if not the family, at least her husband.”
The family doesn’t hold a grudge against Johns Hopkins Hospital, which was not acting illegally at the time and continues to hold promotional events in Henrietta’s name, Sonny said.
“We’ve made peace with Johns Hopkins,” added Ron. “We forgave Johns Hopkins because it helped so many.”
At an event honoring Henrietta and the HeLa legacy, Sonny had the opportunity to view HeLa under a microscope and was amazed to see the cells divide in front of his eyes. He also found it revealing to see his mother’s cells consume another cell sample. “Hey, this lady, my mother’s got an attitude even after death,” Sonny said. “She must have been tough because she sure enough’s taking over the space even when she’s dead.”
But the issue of exploitation still hangs over the family. Ron said that he remembers his aunt Deborah as a businesswoman who “would have wanted something for her family” in exchange for telling their story. But from the book sales, “not a half cent went to the family,” Ron said. He agrees with the public contention that Skloot’s book represents a continuation of the original exploitation of the family.
For freshman Shannon Aurigemma, hearing the perspectives of Lacks family members brought home that this was more than just a book. “It made me think how ignorant we are. We don’t know the origins of the polio vaccine; we don’t know where our coffee comes from.”
Aurigemma felt strongly for how the family has been impacted by all the scrutiny. “In a way it’s like another way our group was using them” for study purposes, she said.
Senior Leandra Fox agreed with Aurigemma’s opinion, but added that hearing the Lackses' perspectives on the book revealed insights into researching and writing that she will be able to use in her own research.
“People tend to see history through this one lens,” Fox said. “But the way Rebecca Skloot saw history was very different from the family. I’m a strong believer of hearing every side of the story before I would consider writing the story.”
Freshman Michael Aiardo recognized that this was a story about people while he read the book, but the Lackses’ comments also served to drive that home. In particular, he was touched by the book’s image of Deborah being laid to rest with painted-red toenails, a penchant for looking manicured that Deborah shared with her mother.
“It was emotional for me; it was sad,” Aiardo said of the parallel images of Henrietta and Deborah. “I don’t know if you would say that’s beautiful or too much, but it was a point where I paused reading the book and just stopped” to sit with the emotions.