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At USF, grandchildren of Henrietta Lacks tell of her family, famous cells

TAMPA — Students in the theater gripped paperback books bearing the picture of a proud woman, hands on hips, head cocked. Her image was spread atop a neon background of mysterious multiplying cells.

She was Henrietta Lacks.

"My dad always said she was a strong mama," said her granddaughter, Kimberly Lacks. "You can tell in the way she stands."

Henrietta died of cervical cancer in 1951 when she was 31, but the story of her miracle cells is known over the world. Her grandchildren came to the University of South Florida on Thursday evening to speak at a free event in the Oval Theater, addressing 700 students, teachers and curious people.

"She's not just a cell," said Kimberly Lacks, 46. "That's a beautiful thing, what her cells did. I'm not taking away from that. But she was a mother. She was a cousin. She was a friend to so many. She was all of that."

The Immortal Life of Henrietta Lacks by Rebecca Skloot was chosen for this year's USF Common Reading Experience. All freshmen students got a copy of the book, woven into class assignments in everything from composition to biology. The book is being made into a movie with help from Oprah Winfrey.

It details the life, death and legacy of Lacks, a poor, black tobacco farmer and mother of five whose cancer cells were collected at Johns Hopkins Hospital without her knowledge. Researchers found her cells were unlike any they had ever seen.

They didn't die. The so-called HeLa cells were able to divide forever, given the right lab conditions. They were used by Jonas Salk in developing the polio vaccine. They have contributed to gene mapping, in vitro fertilization, medications for herpes, leukemia, Parkinson's disease and more.

But while tens of thousands of studies were performed using the cells, Henrietta's family in Baltimore remained so poor they couldn't afford health insurance. The family didn't even know of the cells until 20 years after Henrietta died.

The tale prompted a broader ethical debate, pitting scientific progress against privacy rights.

This year, the family reached a historic agreement with the National Institutes of Health, gaining some control over who gets access to Henrietta's genetic information. That's important, the family said, because while they don't want HeLa testing to stop, the genome could one day reveal personal information about all of them.

"We don't know what that information will be like in 20 years," said David Lacks Jr., 41, who spoke alongside his sister. "We don't want to put it out there if it can be damaging. We want some recourse."

Six members of the Lacks family now speak regularly at colleges across the country, splitting speakers fees — USF paid them about $11,000.

The earnings aren't enough for them to quit their 9-to-5 jobs, they said — Kimberly Lacks is a loan processor and David Lacks Jr. works in information technology. But they said they're glad to have found a way to help support the family.

"Who wouldn't want to be rich and have a bunch of money and live in a big old house?" asked Kimberly Lacks. "Who would not want that? But we try and focus on the good that came from it. Most of us in our family feel proud to know that our grandmother contributed to the world in a major way, and her blood runs through our blood."

The siblings flashed a series of family pictures — Henrietta, her husband, her home, family members peering into microscopes, seeing HeLa cells for the first time.

They shared stories they've learned about their grandmother since Skloot's reporting — that she baked a great banana bread, that she was not shy.

"A couple of the publishing companies she went to wanted her to take the family out of the book," Kimberly Lacks said of Skloot. "Yeah, right. I really felt as though that is what made the book what it is. Because it gave HeLa an identity she never had."

They flashed a final shot of Henrietta's tombstone, carved in the shape of a book. It said:

In loving memory of a phenomenal woman, wife and mother who touched the lives of many. Here lies Henrietta Lacks (HeLa). Her immortal cells will continue to help mankind forever.

Stephanie Hayes can be reached at [email protected] or (813) 226-3394.

At USF, grandchildren of Henrietta Lacks tell of her family, famous cells 09/26/13 [Last modified: Friday, September 27, 2013 12:36am]
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