Today I got to meet one of my heroes, Rebecca Skloot, author of The Immortal Life of Henrietta Lacks.
I had been looking forward to this for weeks, ever since I heard that Skloot was coming to Hopkins. I don’t think I truly realized, though, the full gravity of what this event would be. This wasn’t just any reading, or book signing, or even your standard Saturday lecture at a university. Today was the First Annual Henrietta Lacks Memorial Lecture—the first public gestures of Johns Hopkins to the Lacks family, to Skloot’s book, and to the faces behind the famous HeLa cells.
The story of Henrietta Lacks goes back to the 1950s, when Lacks, a poor African-American tobacco former, went in for treatment at Johns Hopkins Hospital. Cells from the cervical cancer that eventually killed her were taken at that time, without her knowledge or consent. Those cells went on to become the first “immortal” human cells grown in culture, and one of the most important tools in medicine. Henrietta Lacks’s cells, or, as they are known to the thousands of scientists who have used them, Hela cells, were vital for developing the polio vaccine, uncovering secrets of cancer, viruses, cloning, and have contributed to countless other scientific advances. They launched, as Skloot says, “a medical revolution and a multimillion dollar industry,” and they continue to be used today. Twenty-five years after Henrietta’s death, her family finally found out about the cells when researchers came to them asking to do more testing on her children. This began what has been a decades-long journey of investigation and debate that has cut to the heart of bioethics.
After reading Skloot’s book, I was moved almost to tears when Henrietta Lacks’s family stood before an auditorium of people, receiving public recognition within the walls of Johns Hopkins for the first time. “The primary goal of the Henrietta Lacks Memorial Lecture Series is to honor Henrietta Lacks and the positive global impact of HeLa cells,” read the program. T-shirts worn by the event coordinators and handed out to us had “Thank You, Henrietta” emblazoned across their fronts. The recognition of the woman behind the cells might have been long overdue, but today, it certainly came.
More than anything else, the story of the Lacks family and their drawn-out ordeal is illustrative of the necessity for better communication between the general public and the scientific community. There is a huge need for “science translators,” advocates to bridge the gap between research, and everyone else—the public that research is intended to benefit. In Baltimore, white researchers need to be taught why their patients are wary and mistrustful of them. “I have been having patients refuse to be in studies for years, because they thought we would inject them with AIDs,” one researcher said. “I thought it was this crazy conspiracy theory thing. Now, [after reading Skloot’s book], I understand [why there is mistrust].”
Skloot eased the gloves off a little during the question-and-answer period, calling attention to just how much still needs to be accomplished—both for the Lacks family, which has received no direct financial recompense for Henrietta’s cellular contribution, and for the community in general. The steps that have already been taken towards public recognition, though, are huge. And while I agree with Skloot that this is a topic that should not be hastily closed, the very fact that her book was assigned reading for my Community Outreach class at the JHU SON is a sign that the concerns of Henrietta Lacks’s family will not (and cannot) be ignored any further.
This morning, Johns Hopkins announced a $40k Henrietta Lacks East Baltimore Health Sciences Scholarship that will go to a Dunbar high school student every year. They also announced a Henrietta Lacks Community Academic Partnership award for $15k. Rebecca Skloot has set up her own foundation for the descendents of Henrietta and, thanks largely to the proceeds of her book, Henrietta’s five grandchildren currently have their tuition and schoolbooks paid for in full.
As part of this morning’s lecture, Mr. James Potter gave a presentation on the human cell. His projected slides zoomed in on the human body, magnitude by magnitude, until we could see the tiny building blocks we are made of, cells. Walking out of the lecture hours later, though, I couldn’t help but think that the most important lesson that day was not to zoom in, but to zoom out. Sixty years ago, Hopkins failed to sit down and explain the HeLa cells, or their significance, to the Lacks family. But what Rebecca Skloot did with her book was equally important: she sat the scientific community down and had them zoom out, magnitude by magnitude, until the microscopic HeLa cells that have made up so many scientists’ worlds for so long were shown for what they really were—a person, Mrs. Henrietta Lacks.
You can actually hear the audio footage from Rebecca Skloot’s research tapes on a radiolab piece linked through Skloot’s webpage. The piece includes Skloot’s recordings of some of the key moments in the book, including Deborah seeing her mother’s cells for the first time, and Gary Lacks’s faith healing.