 The Story in the SciencebyNicki Leone
I was raised in a science-friendly household. My dad was a chemist, my mom had a degree in biology. My grandfather was a geologist, my grandmother, a botanist. This meant that growing up, my brother and sister and I had bicycles, but also binoculars and microscopes. Legos, and also rock collections and fossils. Monopoly, and also a board game that taught you the eras and periods of the geological time line (no, I’m not kidding about that). It meant that when I came back from a vacation with my grandparents to Florida, I had a tan and a complete list of bird species to be found in the Everglades National Park stuffed in my head, as well as a solid grasp of the role of alligators and forest fires in maintaining its unique and fascinating ecosystem. And that one of the most significant and breathtaking moments of my life was going with my Dad to look at Saturn through a telescope at the Buffalo Museum of Science—an awe-inspiring sight that I can still recall with perfect crystal clarity. As a kid, I thought all this was normal. It never occurred to me that other preteen girls didn’t, as a rule, have pictures of the period table of elements alongside posters of kittens in their bedrooms. This casual inclusion of science in my life had one overarching result: I grew up with a fundamental conviction that the universe was knowable. That understanding was never a question of if, but of when. The universe . . . life . . . was a place for endless discovery and delight. The only other thing I liked as much as learning how stuff worked was reading stories. Science and Story are the two stars that have guided my life. Perhaps this is why I identified so strongly with author Rebecca Skloot when she relates the first time she ever heard the name Henrietta Lacks—sitting in a biology course in a community college, when her professor casually mentioned to the class that the HeLa cell line so fundamentally important to scientific research came from a black woman who died of cervical cancer in 1951. “Wait, What?!?” she thought. But the teacher was unable to tell her anything more. Skloot knew, however, there was a story there. She could hear it. She would spend the next fifteen years of her life writing it. The story was that one day in 1951 a black woman named Henrietta Lacks visited the free hospital clinic at Johns Hopkins University because she “felt a knot in her womb.” (About ten years later, in another part of the campus, my father would first speak to my mother when he needed to borrow her notes from a biology class). She was diagnosed with cervical cancer and underwent radiation treatments that were the standard protocol at the time. It was a painful process and ultimately futile. Henrietta’s cancer was particularly malignant, spreading quickly throughout her body. She was dead within a year. Before she died, however, and without her or her family’s knowledge or consent, doctors removed a piece of the tumor on Henrietta’s cervix and sent it to a nearby lab where researchers were attempting to develop “immortal” cell lines—cell lines that could be grown indefinitely outside the body—for scientific research. Up until then, all attempts had been completely unsuccessful—in the Hopkins lab and elsewhere. Many scientists believed that tissue culture was a pipe dream. Science fiction. But Henrietta’s cells grew like mad. They are still growing. They became the foundation of tissue culture research worldwide, and were instrumental in developing everything from a vaccine for polio to nutritional requirements for astronauts. The HeLa cell line has been so successful that some scientists even think it has become its own, distinct (and non-human) species. HeLa is also one of the building blocks of a multi-billion dollar medical research industry and many, many people have gotten rich off discoveries they have made using (and selling) HeLa cells to develop and test drugs, vaccines and other therapies. One group of people who did not get rich, however, was Henrietta Lacks’ surviving family. In fact, it wasn’t until almost twenty-five years after she died that her children first learned their mother was, in some sense, “alive” in research and hospital labs all over the world. Since none of the Lacks family could afford health insurance, they felt this was profoundly unfair. The Immortal Life of Henrietta Lacks, Rebecca Skloot’s account of the story of the creation of the HeLa cell line and the life of the woman whose cells became ubiquitous in research labs, has received widespread attention for the ethical issues it addresses regarding tissue culture research, patient privacy rights, and what, if any, compensation is owed to patients whose tissues lead to the development of successful and profitable treatments and drugs. It is also documents the evolution of our concept of “informed consent”—something that was completely lacking in the case of Henrietta Lacks. If you grow up, as I did, with the assumption that you have the right to know, then cases like Henrietta’s, where patients are kept in the dark or their questions dismissed as unimportant, feel especially heinous. This was compounded by the racial injustices inherent in the system of segregation—still in full force when Henrietta first walked into the “colored ward” of the John Hopkins hospital. Despite the many interesting (and troubling) questions the book raises, and despite the truly fascinating account of why HeLa has proven to be such a robust cell line, and how it helped to create an entirely new kind of medical research, ethical questions and stellar investigative journalism aren’t the best things about The Immortal Life of Henrietta Lacks. It’s the story. The story that Skloot first knew must exist years ago in that community college class, and that she has relentlessly pursued ever since. As Skloot delved into the brief and brutal life of Henrietta, she began to realize that the story of Lacks and HeLa didn’t end with Henrietta’s death. Instead, she kept finding more stories—such as the stories of the Lacks children, who never really knew their mother and couldn’t understand what had happened to her, or how she could still be “alive” in thousands of research laboratories. Since not one of the Lacks children went to college—or had even attended a science class—the idea that little bits of their mother were being grown and sold and experimented on, cloned and infected with diseases and even tested against a nuclear bomb—well that was like a nightmare. When Skloot’s research brought her in contact with Henrietta Lacks’ surviving family, she found them panicky and frightened, suspicious and bitter, and very, very poor. Skloot discovered, to her horror, that not one of the people who had contacted the children over the years about their mother—geneticists interested in DNA mapping, cancer researchers, doctors needing blood samples, television crews doing documentaries, even lawyers (and con artists) pursuing law suits—not a single one of them had ever taken the trouble to explain to the family what was going on, what their mother’s cancer had led to, or even what had happened to her when she walked into John Hopkins Hospital for the last time, and never came out. At the time the author first contacted the children, half the family thought they would die of cancer like their mother, and half thought that if her cells were “immortal,” then they might be as well. And here Skloot did something extraordinary. Rather than doing a couple of interviews and leaving, she took the family along in her journey to discover who Henrietta Lacks had been, and what had become of HeLa. Skloot formed a deep friendship with some of the children, especially with Henrietta’s daughter Deborah, who was only a couple years old when her mother died and thus had no memory of her at all. “I just wanted to know what she was like,” Deborah said to her, “was she short or tall? What did she smell like?” The author brought Deborah along on trips and to interviews. She told her absolutely everything she found out about the Lacks family—no matter how painful. (And some of it was extremely painful). And most importantly, Skloot took it upon herself to make sure that she explained all the science, all the things that no one had bothered to explain to the family before. The Immortal Life of Henrietta Lacks could have easily been an exposé filled with recriminations and accusations—there is a lot of horror in the story of Henrietta, HeLa, and the Lacks children. The author could well be excused for demanding retribution—or at least some accountability. But Skloot never loses sight of what is amazing in the story as well as what is terrible, and it is the amazing that stays with the reader. So The Immortal Life of Henrietta Lacks becomes a story—not just of Henrietta or HeLa, but of a bewildered, angry family learning—for the first time—about their mother, a woman all of science seemed to know down to her DNA but that they didn’t even have a photo of. And it is also Skloot’s own story of what it was like to be the family’s guide, the person who introduced the children to the woman who had given birth to them, and then disappeared from their lives although she was forever present and accessible to thousands of complete strangers. That is what gives the book its heart and makes it so compelling. As fascinating as it might be to learn how researchers stumbled on the perfect growth medium for tissue culture, or how HeLa allowed for the mass production of polio vaccine, or the fact that in the early days people used to carry test tubes of HeLa in their shirt pockets to keep them warm and viable during transport, the real drama is in none of these things. The real drama is when the author first hands Deborah and her baby brother Zakariyya a colorful, polarized picture of Henrietta Lacks’ DNA and says, “this is a picture of your mother.” There is no mistaking the awe and wonder they feel when they see it. Or when Skloot takes them both to visit a research facility that uses HeLa, and they get to see the massive machines dedicated to keeping her cells alive, hold a vial filled with frozen cells from their mother, or watch through a microscope as HeLa grew, divided, divided again. For the first time, science was not an enemy, but a wonderland. There, standing in a cold laboratory surrounded by humming freezers and incubators, Henrietta Lacks was suddenly in the same room with her children. She was finally, finally real. I recognized that sense of wonder Deborah felt over something as simple and incredible as mitosis—because I felt it growing up, every time my mom or dad or grandfather would explain some little piece of the universe to me. And Deborah might call it God’s work, while I called it physics, but we both recognized it as a kind of miracle. As Deborah Lacks said, looking through the microscope for her first sight of her mother’s HeLa cells, dyed bright fluorescent green for contrast, it was beautiful. Books mentioned in this column:
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