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Rebecca Skloot with members of the Henrietta Lacks family in conversation at Stanford

Listen to the human stories, the Henrietta Lacks family tells scientists

Author Rebecca Skloot and Henrietta Lacks family members discuss the importance of telling the human stories behind medical science

Henrietta Lacks was a poor, African American tobacco farmer and mother in the 1950s when physicians, following protocol at the time, took a tissue sample of her cells without her knowledge just prior to treatment for cervical cancer.

Lacks would die a horrible death a short time later at the age of 31, her body ravaged by those rapidly metastasizing cells, but those same cells preserved in that tissue sample would live on, reproducing in labs around the world, and changing the face of science and medicine.

Today, those cells called HeLa -- the first immortalized cell line -- have been the subject of more than 74,000 studies, yielding insights into cell biology, vaccines, in vitro fertilization and cancer. But virtually no one knew the story behind those cells until the publication of the bestselling book The Immortal Life of Henrietta Lacks in 2010.

"Her doctor, before treating her, cut a bit of her cervix tissue and for reasons that stayed a mystery for many years, her cells just never died," said Rebecca Skloot, the author of the book, at an appearance on campus that included two members of the Lacks family, Jeri Lacks-Whye, Henrietta's granddaughter, and Alfred Carter, Jr., her grandson. The event was hosted by Stanford Storytelling Project and Medicine and the Muse. (The cells survived because they are cancerous and have several unique adaptations).

"Everything we know about our grandmother came from the book," said Lacks-Whye. "We have a better sense of who she was as a person, as a mom, as a wife. They say she loved to wear red nail polish, that she never left the house without a neatly pleated skirt, loved to cook, had hazel eyes, a small waist, size 6 shoes. It's a great honor to know our grandmother as a person rather than just as HeLa cells."

Skloot worked for years alongside Henrietta's daughter, Deborah (Carter's mother), whose determination and desperation to uncover the true story of her mother resulted in a book that has changed not only the lives of the family she left behind, but the course of science as well. In 2013, the National Institutes of Health set up a panel with three of the Lack's family members, including Lacks-Whye, to review requests to conduct genomic research on HeLa cells. The goal is to keep the family informed and protect their privacy, said Russ Altman, MD, PhD, a Stanford professor of bioengineering who is also one of the panel members.

"Deborah was desperate to know what her mother was like," Skloot said. "She was an infant when her mom died. And she would say things like 'Can you look in these cells and tell me what my mother's favorite color was?' She was worried that research on these cells would hurt her mother in the afterlife. She'd say things like, 'Can she rest in peace if you are shooting bits of her off to the moon?'"

Scientists who began doing research on the Lacks family in the 1970s to try and find out more about the HeLa cell line, had no idea how to respond to Deborah's questions, Skloot said. One gave her a medical school genetics book, and said, 'Here, read this.' The family's lack of understanding of science and the medical field, resulted in much fear and anger that was only exacerbated by the the researchers' inability or unwillingness to bridge this enormous communication gap.

Carter, who was in prison when Skloot was researching the book, said that it was "heartwarming" when she came to visit him, and they worked together on fact finding for the family history.

The book, he said, only further added to his love and pride for his mother, Deborah, and the strength she had.

"'Right before my mom passed away she told me she was scared. I said 'Don't be scared. I got my strength from you.' She said, 'For real?" I promised her I would continue to do her work when I got out."

When a pre-med student in the audience asked the question, "What can future scientists and physicians do to address the bioethical issues surrounding scientific progress?", it was Carter who answered:

Just keep in mind that these are human beings that you are dealing with. Try to talk to them in a way that they can understand. Just know that they're human.

Photo by Jake Warga

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