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The Immortal Tale Of The Unethical Use Of Human Cells Recounted At Maryville University

(courtesy of Karen Collins)
Karen Collins (center) who teaches at Webster University, was among people attending a discussion Thursday at Maryville University by Kim Lacks (left) granddaughter of Henrietta Lacks; and Veronica Spencer, great-granddaughter of Henrietta Lacks.

Veronica Spencer seems to thrive on speaking to audiences about the heartbreaking story of a great-grandmother who became famous because of her cells.

“I love the travel,” Spencer said, during a visit Thursday to Maryville University. “I get to see the world, visit places I never expected to go. When someone hugs me and says thanks, I realize the person they are talking about is my great-grandmother who has done all of this for the world."

Spencer's great-grandmother, Henrietta Lacks, was a poor tobacco farmer whose cells, used without her consent and knowledge, became an inestimable tool in medical research around the world. Her plight was uncovered in the bestselling book "The Immortal Life of Henrietta Lacks."

Lacks died in 1951. But her cells continue to live and have become famous in their own right. They were nicknamed HeLa, and are believed to be the most widely used cell line in the world for research. The HeLa cells were integral to several modern medical developments, ranging from the polio vaccine to gene mapping.

For years, there was a lot of mystery surrounding the HeLa cells: To whom did they belong? How did science first acquire them? Did the cell-owner's family know about the HeLa cells?

Journalist Rebecca Skloot told the moving story of Henrietta Lacks and the HeLa cells in her 2010 best-selling book. noting that Lacks' family was kept in the dark about this research until 1973. They only began to learn about it that year because a scientist called the family to seek blood samples for research on the genes inherited by Henrietta’s children.

At Maryville, Veronica Spencer was joined by Lacks' granddaughter Kim Lacks. Their talk was full of mixed-emotions. On the one hand, Spencer and Kim Lacks expressed forgiveness for biotech companies that have made millions of dollars from research involving the cells. On the other hand, they expressed disappointment that the family received no financial benefits from this work.

Spencer, who is studying to become a nurse, said, “Although my family has not received funds for compensation, we are not bitter. We are a close family. We talked to each other about it and decided it was time for us to move forward.”

Still, there is a hint of regret over what might have been, in the voice of granddaughter Kim Lacks.  A loan processor, Lacks said, “had I known the things I know now, 20 years ago, my life probably would have taken a whole different pattern.”

She said if she had known two decades earlier what researchers were doing, then she might have been able to “help my family find out what kind of financial gains, if any, we could obtain.” Now, she said, the statute of limitations has cut off all possibilities of legal redress.

But she remains upbeat. She noted that thanks to the book sales and a foundation set up in the name of Henrietta Lacks, family members are eligible for tuition for education, along with medical and dental assistance.

Interest in the family is likely to pick up again when HBO releases a film version of the book.  Spencer  joked that she wants to start a petition for a role in the film. “I think I have enough personality to win a part in the movie,” she said.

But Kim Lacks brought Spencer down to earth, saying, “We have put ideas in our heads about who could play parts, but we don’t have any definite answers about the movie at this time. It is a movie in the works.”

In any case, Spencer is enjoying her chance to travel and delight audiences with the story of how her family discovered, decades later, that the cells of Henrietta Lacks were the subjects of experiments in labs around the world.

Said Spencer, the only drawback to this year’s speaking tour has been the weather. “It makes me feel like a popsicle.”

Robert Joiner has carved a niche in providing informed reporting about a range of medical issues. He won a Dennis A. Hunt Journalism Award for the Beacon’s "Worlds Apart" series on health-care disparities. His journalism experience includes working at the St. Louis American and the St. Louis Post-Dispatch, where he was a beat reporter, wire editor, editorial writer, columnist, and member of the Washington bureau.