Henrietta Lacks story was not an easy cell
By Ron Nurwisah
January 31, 2011 – 7:00 am
Author Rebecca Skloot remembers the exact moment when Henrietta Lacks entered her life. She was 16, in a community college biology class with hundreds of other students when her instructor described the woman that would haunt her for more than two decades.
HeLa cells, taken from Lacks, a poor black mother dying of cervical cancer at Johns Hopkins University, was one of the most fortuitous accidental scientific discoveries ever. They were the first human cells that were infinitely reproducible, able to grow as long as the conditions were right. They were immortal, and since their discovery in the 1950s, the cells have been shot into space, used to test the polio vaccine and helped to unlock secrets of the human chromosomes.
HeLa was so ubiquitous that Skloot’s biology teacher included it in his lectures. “He wrote her name on the board and told us that she was a black woman and that was it,” Skloot recalls. But that wasn’t enough for Skloot, today a veteran science journalist and author of The Immortal Life of Henrietta Lacks, which tells the story of Lacks, her cells and their impact on the world and the Lacks’ family.
Skloot, who initially wanted to be a veterinarian, never could shake the story of HeLa. “Many years later, when I started getting interested in writing, that was when I finally said that maybe I can actually figure out who this woman was and tell her story,” Skloot says.
HeLa eventually became a full-blown obsession, a kind of undercurrent in everything she did. The slow accretion of bylines and her development as a science writer and journalist for more than a decade were built around being able to tell Lacks’ story. “Everything I did was in some way designed to help with this book,” she says.
Skloot’s stubborn dedication to the Lacks story comes through clearly in her book. Not only was she able to piece together the woman’s life, but she was also able to shine a light on the fates of Lacks’ descendants.
In the decades since Henrietta’s death, the Lacks family never saw any money for the cures and advances their mother’s cells enabled. For decades they had no knowledge about HeLa cells altogether. And then there were the betrayals: Over the years, doctors tried to take samples from the Lacks family to try unlock the mysteries of HeLa, and in one unfortunate incident a con artist tried to take advantage of the family after promising them he could win a multi-million-dollar lawsuit.
It wasn’t surprising to Skloot that she encountered hostility when trying to reach out to the Lacks family. One obstacle was Deborah, Henrietta’s daughter. “A lot of the walls I hit was her over and over again. I understood why she was scared as I learned more of her story,” Skloot says.
But in the end, Skloot’s persistence and her willingness to help the Lacks family uncover their own past and explain HeLa’s place in the scientific world would gain her the family’s trust. “I worked on the book for so long that there was a point where they sort of teased me, ‘You’re not really writing a book, you just like hanging out with us,’ ” she says.
Maybe there’s truth to that. The success of the book pushed Skloot to create the Henrietta Lacks Foundation, a charity that’s already sent some of Lacks’ grandchildren to school and aims to help others who have made contributions to scientific research without their knowledge or consent. Skloot and members of the Lacks family are also working as consultants on an Oprah Winfrey-produced TV movie based on the book.
“It’s opened up conversations. The younger generations are so proud of Henrietta. They see her as a rock star. They go do a regular microscope day,” says Skloot. “Members of the family, sometime 10 or 20 of them, will go to Hopkins and go see the cells and talk about them.”