Sixteen year-old college freshman Rebecca Skloot is about to nod off in bio class when the instructor starts talking about a woman named Henrietta Lacks. He says that Henrietta's cells, taken from a cervical cancer tumor that eventually killed her, were the first to be successfully grown in the lab and were responsible for a whole slew of important advances in medicine in the past 45 years.
Skloot's hooked. She vows to learn everything she can about this woman and her mysterious cells. She wants the world to know the person behind the science.
The Immortal Life of Henrietta Lacks tells that story. When it was published in 2010 after a decade of research, it jumped onto the New York Times bestseller list and stayed there for 75 weeks. It won book awards and showed up on common reading lists for hundreds of colleges and high schools. Critics raved that Skloot told a complex scientific and personal story with brains and heart. Shmoop agrees completely.
When Johns Hopkins gynecologist Howard Jones got his first glimpse of his patient Henrietta Lacks' cervical cancer, he was shocked. Henrietta's tumor was like nothing HoJo had ever seen. For one thing, it was growing like gangbusters. He sent them to a lab, where they reproduced and grew like crazy, resulting in an "immortal" cell line called HeLa that offered scientists a limitless supply of human cells on which they could experiment to their hearts' content.
Henrietta's cells were sent to labs around the world and were used in some of the major lifesaving medical discoveries of the 20th century: the polio vaccine, understanding of the human chromosome, the first steps toward organ transplantation, in-vitro fertilization techniques, and treatments for cancer. And if cells could be immortal, then what about people? Lots of folks thought these cells would unlock the secrets of reversing aging.
But there's a wrinkle in this fairy tale.
Henrietta never knew that she was being so generous. Neither did her family. Consent to use the cells and disseminate them around the world was never obtained. The family knew nothing about it. While HeLa cells grow into a multi-million dollar business, people in the Lacks family can't even afford to see a doctor. They've never benefitted from Henrietta's cells, despite the fact that her cells are in labs everywhere, making the world a better place. It's sure not making their world any better.
When Skloot teams up with Henrietta's daughter Deborah to uncover the story of HeLa, they discover a long and agonizing history of unethical scientific experimentation, bizarre legacies of slavery and racism, and egos the size of Texas. Finally, with the help of Skloot and a good-guy researcher, the family learns what the cells are and how much good they've done. It helps them deal with the loss of the mother they never really knew and finally get her story told.
You'll learn an amazing amount of science in the book, all explained very clearly and with a good storyteller's sense of narrative. But you'll also learn that progress in medical research has to go hand in hand with maintaining human dignity and privacy. Skloot makes it clear that the story's moving in the right direction now. But that's partially because Henrietta's "gift" made us look hard at what we value and what we want to be as a society.
One thing's certain: we're more than the sum of our body parts and, despite all our scientific advances, we still have a long way to go in learning that lesson.
Did you get polio and lose the use of your legs when you were a baby? We're betting the answer is no. And for that, you can thank Mrs. Henrietta Lacks and the scientists who learned how to culture her unusual cells. Same for anyone who's beaten cancer, overcome infertility, or had a cornea transplant.
But the story of Henrietta Lacks and HeLa cells is about so much more than the important scientific advances that they helped make possible. It's also the story of racial politics and medical ethics, and how both of those things have evolved (or not) in the years since Henrietta's death.
Consider this: in 2011, a lawsuit was brought against the Kennedy Krieger Institute in Baltimore (yep: it's affiliated with Johns Hopkins) for knowingly exposing poor children and their families to lead in order to study its effect on these children. 2011. Really. It's another story of race, poverty, and exploitation playing out on exactly the same stage that Henrietta's story did.
Did we mention that this happened in 2011? Henrietta died in 1951, but the issues that her story raises are even more important in today's age of technology. Skloot's work gives us the info necessary for us to advocate for change so that medical science does what it's supposed to do: improve health but respect our equality and dignity. After reading this book, we bet you're going to think differently about all those annoying consent and privacy forms you have to sign at your doctor's office. Believe us, the alternative is much worse.
And when you're sitting in the examining room for 45 minutes in that little gown (it opens in the back) with those crappy magazines, maybe you'll be a little less exasperated. Because you'll know about the huge number of Americans, like some of the Lacks family, who can't get access to decent health care at all.
Making Things Right
Rebecca Skloot has taken her work to another level by creating The Henrietta Lacks Foundation, a non-profit organization to benefit members of Henrietta's family and others who've been used as subjects in scientific research without consent.
Lacks Family, Represent!
The Lacks family has created their own website to teach about Henrietta's contribution to science and to promote the mission of the Henrietta Lacks Foundation. Check out the photos of the gravestone dedication with the family and Dr. Pattillo—they really bring the story to life.
More Experiment Shenanigans
Just when you thought you couldn't handle any more stories of the government and/or private scientific entities conducting bizarre and ethically questionable experiments on human subjects...
Physician, Control Thyself
The World Medical Association's Declaration of Helsinki is a document that outlines ethical practices for doctors conducting research on human subjects. It's unique because it is the result of the global medical community attempting to regulate themselves.
Oprah Winfrey and HBO were planning to produce a movie based on Skloot's book, but the movement on it has been glacial.
The Way of All Flesh
You'll find Adam Curtis' 1997 documentary about Henrietta Lacks embedded here on his blog.
After decades of use of HeLa cells without obtaining consent from the Lacks family, the National Institutes of Health finally reach an agreement to offer Henrietta's family some degree of control over her sequenced genome.
A comprehensive article on the evolution of ethical treatment of human subjects (or lack thereof) in the scientific community. This article includes a brief history of some fairly atrocious practices, so make sure you're prepared when you dig into it.
Milwaukee Loves Dr. Pattillo
Milwaukee's proud of Roland Pattillo, who practiced medicine there for 35 years. This is a great article about how he became a physician against all odds.
NYT Loves Henrietta Lacks
Here's the book review in the New York Times. It's a rave.
An Academic Legacy
The Johns Hopkins Institute for Clinical and Translational Research has instituted an annual Henrietta Lacks Memorial Lecture. Here's a video of the most recent lecture in Lacks' honor, "Fatal Invention: How Science, Politics, and Big Business Re-Create Race in the Twenty-First Century."
Follow this link to binge watch the BBC documentary The Way of All Flesh—the vid that Mama Speed checks out of the library for Rebecca Skloot—and a host of other videos related to Henrietta's story.
The Family Speaks
Henrietta and David's grandchildren share family pictures and speak about their journey to learn more about their grandmother and her contributions to science.
Another Kind of Lab
RadioLab speaks with Rebecca Skloot about her work on Henrietta Lacks' story.
Getting the Word Out
Skloot takes Henrietta's story across the pond and chats up The Guardian's Alok Jha.
Beautiful But Fierce
The African-American Trailblazers of Virginia website includes information on Henrietta Lacks, but it has extraordinary pictures of the HeLa cell in various stages of division. You can also watch a video of the cells dividing.
For Visual Learners
Here are some infographics that show various cell lines and a timeline of scientific progress spawned by HeLa cells.