Legacy of Henrietta Lacks’ ‘immortal’ cells lives on in medical advances, ethical debates

May 19--PEORIA -- Henrietta Lacks was buried 65 years ago at the age of 31. But for reasons that remained a mystery until recently, cells harvested from her cancer-ridden body wouldn't die.

Known as HeLa cells, they live on in research laboratories around the world, in groundbreaking medical advances and as a cautionary tale that touched three generations of Lacks' family.

"There's really no one who hasn't personally benefited from these cells in one way, but typically, in many ways," Rebecca Skloot, author of "The Immortal Life of Henrietta Lacks," said Wednesday during OSF HealthCare's annual research symposium at JUMP Trading Simulation and Education Center.

HeLa cells were the first human cells cultivated successfully outside the human body. Jonas Salk used them to develop the polio vaccine. They've been used in the development of treatments for cancer, Parkinson's disease, hemophilia and influenza. They were the first cells ever cloned and the first ever mapped.

The story of Lacks, her family and her cells, a best-selling book, will soon be an HBO movie produced by Oprah Winfrey.

Skloot, the symposium's first nationally known speaker, and two of Lacks' relatives discussed the personal, medical and ethical implications left by a poor black woman who died in the "colored ward" of Johns Hopkins Hospital in Baltimore. Her cells, the first human biological material bought and sold, laid the groundwork for a multi-billion dollar industry at a time her descendants didn't have health insurance.

"It was amazing for science but damaging for her family," Skloot told the audience of about 200.

Lacks' cells were used without her knowledge, which was not uncommon or illegal in the 1950s. Subsequent questions involving the cells led scientists to harvest her children's cells and ship them around the world for research in the 1970s without their knowledge. (Scientists learned much later that it was not inherited genes but a fluke connected to a virus that caused the HeLa cells' immortality.)

In this century, after Skloot's book came out in 2010, German scientists mapped the sequence of the HeLa cells and posted it online for anyone to download -- again without the family's knowledge.

"I was in shock," Skloot said, explaining the genetic privacy raised for Lacks' descendants. Scientists also debated whether and how posting the DNA sequencing online invaded the family's privacy.

The third generation of Lacks' family was the first to gain at least a small measure of control, if not direct profit, over the HeLa cells.

"They said 'enough,'" Skloot continued, "we don't want our kids drawn into the next big ethical moment."

Family members had the site taken down while they studied their options. They met with scientists, including twice with Frances Collins, director of the National Institutes of Health and a leader of the Human Genome Project.

Researchers must now meet specific criteria to access HeLa's genomic sequence. Two family members sit on the panel of scientists who make the decisions, "which has never happened," Skloot said.

Lacks' great-granddaughter, Victoria Baptiste, is a nurse from Baltimore.

"Scientists can be so into their research that they sometimes detach themselves from the humanity of it," Baptiste said after Skloot spoke.

About 50 area medical professionals, including doctors, residents and nurses, presented research projects. Many of them waited in long lines to have Skloot and Lacks' relatives sign well-read books.

"This personifies our passion for protecting human subjects," said Dr. Stephen Hippler, chief clinical officer of OSF HealthCare Group, as he stood in line.

"I think the story really resonates with our research community."

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