In 1988, when Rebecca Skloot ﬁrst heard the name of the woman whose cancerous cells had become “immortal,” thriving in research labs around the world long after killing their host, little did she know she had found the story of her life—or one of them, as it turns out.
By now, many know Skloot as the author of The Immortal Life of Henrietta Lacks (Crown, 2010). The book paints a vivid picture of Lacks’s life and recounts how her diseased cells, taken without her consent or even knowledge, helped advance some of the greatest breakthroughs in medical science long beyond her death in 1951. The book shot up the New York Times best-seller list soon after it was published, the success a reﬂection of its astonishing story and of Skloot’s attention to detail and drive to get the facts right. The book took her more than 10 years to research and write, and she still crisscrosses the country to talk about it, often alongside members of the Lacks family.
Part detective story, part family saga, part portrait of US race relations, and part history of cell technology, Henrietta Lacks struck a deep cultural nerve. A Times reviewer called it “one of the most graceful and moving nonﬁction books I’ve read in a very long time . . . it feels like the book Ms. Skloot was born to write.”
In a sense, it was. As a 16-year-old, around the same time she learned about Henrietta Lacks’s cells, Skloot saw her father decline from marathon runner to “completely incapacitated,” unable to walk, with almost no memory. “He just became this stationary, what seemed to be a dying person in our living room,” recalls the author, who conducted research for her new book while she was a visiting scholar at the Radcliffe Institute this past fall.
Looking for answers, her father enrolled in a clinical trial. With her new driver’s license, Skloot took him to weekly appointments where doctors would test his stamina by making him run to the point of collapse on a treadmill, or check his balance by having him crawl around on all fours. It was a traumatic experience for a loving daughter.
“There I was, as a kid, just sort of watching this happen to my father and being in the room for all of it.”
Her father’s illness—which turned out to be a virus that had attacked his brain—fueled her interest in science and research and her obsession with Lacks. But as she worked on the Lacks project, a separate book idea never entirely receded, Skloot says, one that combined her passion for science with another obsession: animals.
Skloot’s love affair with creatures great and small runs deep. As a young girl she opened a surgery ward in her bedroom for her stuffed animals. She smuggled “pets” into the house, including a rat that she hid in her closet. She even broke into the neighbors’ house to kidnap their dog for playdates.
When she struggled to engage in school, her parents tried to coax good grades from Skloot with the promise of pets if she performed well, which she never did. Even so, on her 16th birthday, she got an Alaskan malamute mix with a ﬂuffy black, gray, and white coat. She called him Sereno.
“He went everywhere with me,” says Skloot, “on my crazy escapades.”
Planning to eventually become a vet, Skloot worked several part-time jobs as a technician in veterinary clinics and research labs and, to help pay her undergrad tuition, at Colorado State’s veterinary school. It was a challenging time, as Skloot struggled with the intersection of science and ethics. In the clinics, she took care of people’s pets, while in the morgue’s freezer she saw ﬁrsthand the “end result of all the teaching and research.” In one lab, she assisted a researcher working on a virtual-reality program he hoped would replace the use of live dogs for teaching anatomy and surgery, while in another, she watched important science being done with laboratory animals.
“All my jobs were mirroring all these big questions I was having,” she says. “How do we take care of animals ethically? How do we decide when you use an animal in research versus when you use some of these other models?”
Those questions coincided with her decision to take a writing class to fill a school requirement, and a writer was born. Skloot’s work fed her creativity and filled her class assignments. “I was hemorrhaging stories about the world of veterinary medicine.”
After graduation, she passed on vet school for a master of fine arts program at the University of Pittsburgh, producing a thesis on forgotten women in science that eventually morphed into The Immortal Life of Henrietta Lacks.
The book was deeply influenced by her early work with animals, Skloot says. Her experience in clinics, research labs, and the morgue helped her become “the person who wrote Henrietta Lacks’s story,” she says. “I started off in this place of facing these really big, complicated ethical questions from the inside, and seeing both sides.”
Offering different points of view is what she plans to do with her new book, which will explore the often complex and sometimes controversial dimensions of the human-animal bond and investigate, as her website puts it, “some of the biggest, and as yet unanswered, questions at the heart of animals’ roles in our lives.”
“I value the science,” Skloot says. “It’s incredibly important. And I also understand the ethical questions from very personal experience, both on the human side and the animal side.”
“In a sense that’s what I feel like I was trying to do in the first book,” she adds. “Take these worlds that don’t trust each other, don’t understand each other, can’t talk to each other, and as a result, bad things happen, both for science and for people, and sort of say, ‘Okay, let’s see if we can look at the places where these overlap and how can we have a productive conversation based on facts about all of this.’ That’s what I’m hoping to do.”
Much of her research involves diving into her own past, poring over 20-year-old notes from college. She laughs and calls her early writing “overwrought,” but her initial instincts about capturing narrative details on the page have proved invaluable.
“I don’t even know how I would be able to write this book if I hadn’t been writing about it for two years in my undergrad classes,” she says. “So really, that stuff forms the beginning of the book that I am writing now.”
Current research will also inform her work. During her time at Radcliffe, Skloot met with experts from across the University, connecting with scientists and visiting labs to help her flesh out the book’s key themes.
“Rebecca’s interest in animal-human interaction runs deep, and she is bringing the same rigorous approach to this subject that she applied to Henrietta Lacks’s cells,” says Radcliffe Dean Lizabeth Cohen. “Being a visiting scholar at the Institute gave her the chance to engage in conversation with experts across the University as she takes on a challenging new subject, and allowed our Harvard community to learn from her unique perspective. We hope that her time at Radcliffe will enrich this fascinating new book.”
Though she is deep into her new project, interest in her ﬁrst book still commands a crowd. Skloot delivered a talk to a packed Knafel Center and met with more than 60 Harvard students on the Radcliffe campus during a lunchtime discussion the following day.
With so much attention on her debut, does she ever worry about living up to her runaway success? Not if she stays true to her own sense of wonder and curiosity, she says—the kind of amazement she first felt when her high school biology teacher wrote the name Henrietta Lacks on the chalkboard. That wonder made her want to know more, and the incredible story she uncovered about Lacks made her want to share it with the world.
“I tell myself I just have to keep writing stories that make me feel that way.”
“YOU HAVE AN OBLIGATION TO STAY INVOLVED”
During a lunch meeting with several Radcliffe fellows, Skloot discussed her continuing relationship with Henrietta Lacks’s family. “Usually you write a book and move on,” she said. But in this case, her involvement with the family has only intensiﬁed since the book’s publication, in 2010.
Skloot’s friend and fellow journalist Michael Pollan, who holds the Suzanne Young Murray Fellowship at Radcliffe this year, agreed with her. “You have an obligation to stay involved,” he said. “They’re your professional relatives.”
With some of the income from The Immortal Life of Henrietta Lacks, Skloot has established a foundation to aid Lacks’s children and grandchildren with education and health care. She also helps Lacks’s grandchildren ﬁnd mentors to assist them with educational goals. But perhaps her most signiﬁcant assistance involves matters of scientific ethics.
In 2013, without notifying the Lacks family, a group of scientists at Europe’s flagship laboratory for the life sciences—called EMBL—which operates at five sites, sequenced Henrietta’s genome, the HeLa genome, and posted it online. With the right computer program, this information could reveal whether Lacks carried the gene for early-onset Alzheimer’s or a predisposition to heart disease, for example. “People go through genetic counseling to decide whether they want this information,” Skloot told the fellows.
After contacting Francis Collins, a geneticist and director of the National Institutes of Health, and organizing a team of genetic counselors and bioethicists to meet with family members, Skloot got in touch with the EMBL scientists. EMBL immediately took Lacks’s genome offline, and Skloot helped the family form a committee of four NIH scientists and two Lacks family members to review applications from those who want to use it in the future.
LOOKING FOR STORIES, NOT SCOOPS
The day after her lecture at the Radcliffe Institute, Skloot met with more than 60 Harvard students whose concentrations range from history to chemistry to evolutionary biology. They met in Fay House, where Skloot described her path from underachieving high-school student to best-selling author.
“My freshman year of high school, I got a .5 grade point average,” she said. “I don’t know how that’s even possible.” She was bored with school and didn’t follow the rules. “The teachers had given up on me, but my parents understood that this energy I had was not being channeled in a productive way.” After failing that year of high school, in Portland, Oregon, Skloot transferred to an alternative public high school. There, her teachers encouraged her to create her own curriculum and to take classes at the local community college.
With her ardent affection for animals, Skloot had long planned to become a veterinarian, so she enrolled in a medically focused biology course, where she ﬁrst heard about Henrietta Lacks, the woman whose story she would later investigate and write for more than a decade. With her teacher’s encouragement, Skloot pursued her interest in Lacks. In the process, she became a straight-A student.
In college, Skloot studied hard to become a vet. “I had ‘vet tunnel vision,’” she said. That is, until she discovered writing. She wrote papers on subjects she cared deeply about—including the ethics of using animals as research subjects and the overlooked Henrietta Lacks—prompting her writing teacher to encourage her to consider becoming a science writer.
Skloot quoted her teacher’s words, which she said have inﬂuenced her ever since: “Letting go of a goal doesn’t mean you’ve failed, as long as you have a new goal.”
She described her current work as literary journalism, in which she uses characters, dialogue, descriptions of weather, and other techniques that fiction writers use. Unlike traditional journalists, she doesn’t look for news hooks or scoops or topics. Stem cells, for example, are not a story but a topic. “To me, it’s always about the stories,” Skloot said.
This article, excluding the sidebars, originally appeared in the Harvard Gazette and has been edited for Radcliffe Magazine.