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Henrietta Lacks, a Genetic Cell-ebrity

Sonny Lacks shares his mother's medical legacy

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David "Sonny" Lacks was 4 years old when his mother, Henrietta, a poor black tobacco farmer, died of cervical cancer.

"The only thing I remember about my mother is the funeral," Sonny told Boise Weekly from Baltimore, where his mother spent the last years of her life. "It was raining, and everybody around was dressed in black."

The legacy of Henrietta Lacks emanates in waves, rippling through members of her immediate family, researchers at Baltimore's Johns Hopkins Hospital and every person who walks into an American doctor's office.

While Sonny remembers little of his mother, her story is known by millions and was recently chronicled in a book by Rebecca Skloot, The Immortal Life of Henrietta Lacks.

Henrietta's cancer developed rapidly. Feeling immense pain one evening in 1951, she got in the tub and felt a small, soft lump inside her uterus. As a poor Southern woman, Lacks went to Johns Hopkins' indigent ward, the only Baltimore hospital that would treat blacks.

The cancer spread through her body quickly, and she died nine months later on Oct. 4, 1951. Without her knowledge, a small sample was preserved from the fast-growing tumor inside her body.

The sample was sent to the laboratory of the late Dr. George Gey, who had been searching for a better way of identifying cancer for years. He couldn't get human cells to last long outside of their owners. Then Henrietta's sample came along.

"My mother was altogether different," said Sonny. "That was a cell line that would live outside the body. That had never been done before."

Gey knew he'd hit something big. He called the cell samples he was reproducing "HeLa," after the woman who created them. Instead of patenting the cells, he sent them out for free.

HeLa cells were produced by the thousands, then by the millions, then by the trillions. They were the cells Jonas Salk used to create the polio vaccine. They have been used for AIDS research, in-vitro fertilization and were sent into space long before humans.

When doctors and researchers arrived on the Lacks' doorstep 20 years after Henrietta's death, the family heard about HeLa for the first time. Sonny's sister, Debra, and his father, David Sr. were shaken.

In a 2010 episode of NPR's Fresh Air, Skloot described David Sr.'s feelings that day:

"The way he understood it, 'We have your wife, we've been experimenting on her for years, and we want to take blood samples from you and your children to see if you have cancer,'" explained Skloot.

This wasn't the case, but it's what David Sr. and Debra understood. Debra worried that all these "parts" of her mother were parts of her soul. She wondered if these experiments had hurt her mother or prevented her from resting peacefully.

Skloot describes this reaction as resulting from the family's lack of education. Scientists wouldn't tell the family much, and they couldn't comprehend what they were being told. Sonny said the family knows a lot more about Henrietta now.

"We're not an uneducated family," said Sonny. "My daughter went to college. We've got quite a few members in the family that went to college."

Times have changed, he said.

"The book portrays a lot of us as poorer," said Sonny. "But that's a different generation."

Henrietta's care before her death was questionable. She wasn't told that the treatments she received would leave her sterile--like most poor, black patients at the time, she wasn't informed and didn't have any options.

"Back then, they couldn't go to the hospital," said Sonny. "You got the poor get treated worse, and the rich get treated a little better. It's not so much the black and the white--even though blacks were treated poorly back then--it was mostly poor and rich."

For Sonny, the revolution in medical science spurred by his mother's cells can't really be called a benefit to all of society, not when so many still lack access to health care.

"Her cells are making medical history, and here some family members don't have health insurance," said Sonny, who works as a truck driver. "I can't afford health insurance."

Not long after HeLa cells were used to cure polio, some companies commercialized their production. Now, a vial of Henrietta's cells can be purchased for $250, or up to $10,000 for a specialized, patented product. The Lacks family hasn't tried to recoup any of that money.

"We haven't tried and nobody has offered," Sonny said. "We have a lawyer right now, but we haven't received any compensation from anyone."

But Henrietta also left behind another legacy. Though it took decades, Henrietta's case brought the ethics issue to the forefront of medicine.

"You have to give written consent now," said Sonny proudly. "They have to let you know that your sample created that cure ... It's come a long way from my mother's day."

But Henrietta's case isn't the only instance of medical experiments using African-Americans. At the Tuskegee Institute at Tuskegee University in Alabama, black men were used to conduct a 40-year syphilis study. The men withered away while researchers watched and refused to administer a vaccine developed midway through the study. Coincidentally, the first HeLa cell factory was created down the hall at Tuskegee University.

"You have these black scientists at an all-black institution using this black woman's cells to save millions of white people"--Skloot paused during her NPR interview, referring to HeLa's role in the polio vaccine, then inhaled before finishing her sentence--"who wouldn't have let them sit next to them."

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