The Immortal Life of Henrietta Lacks by Rebecca Skloot

Henrietta Lacks has probably saved your life. If not yours, then almost certainly that of someone you know.

And you don’t even know who she is.

Or, rather, who she was. The original Henrietta Lacks was an African-American woman who lived near Baltimore, grew up in poverty, worked hard, and died in 1951, overcome by a cancer that started in her cervix and spread out to take over her whole body. She left behind five children, a husband, and a legacy that would forever change our understanding of biology and medicine.

When she first went to Johns Hopkins Medical Center and was diagnosed with cancer, her doctor took a small sample of cells from the tumor and sent it to his colleague, George Gey. Gey had long been in the pursuit of what seemed like an impossible dream: to culture human cells and keep them alive in the lab. By doing so, he hoped to create new ways to test medicine and study human biology without all those pesky patients getting in the way. Unfortunately, his work had thus far been a failure. Human cells, no matter how hard he tried, simply would not survive outside the body for very long. Gey tried all kinds of media and methods, inventing some machines that have become invaluable to cell culture research, but he simply watched culture after culture die in the lab.

All of that changed when he got HeLa.

The cells from Henrietta Lacks, which were known as “HeLa,” not only didn’t die – they thrived. They were so robust that Gey and his staff soon had more HeLa cells than they could keep, much less use, so they started sending them off to any researcher who asked. With HeLa, researchers around the world began to make discoveries that would save lives and change the world.

But with this ever-growing cell line – which was baked, boiled, frozen, irradiated, cloned, cut up, and sent into space – it was very easy to forget that there was once a woman named Henrietta Lacks, with a family and a legacy of her own.

Plenty has been written about HeLa in the last fifty years, and any researcher who works with cells is probably well aware of its existence and importance. But very few people know about Henrietta, and it was this oversight that Rebecca Skloot is trying to correct in this book.

She began her quest with a simple question: “Who was Henrietta Lacks?” The fact that she got the right name was surprising enough, actually. HeLa had previously been identified as Henrietta Lakes, Helen Lane, and Helen Larson in various publications. Skloot believed that there was more to the story than just a bunch of immortal cells, and was determined to find Henrietta’s surviving relatives and learn more about this woman who had somehow become so important to the world.

Skloot wouldn’t be the first, however. A writer for Rolling Stone, a con man, and the BBC had all attempted to look into the life of Henrietta before, and found that the surviving Lackses were not only unaware of what their mother had become, but largely unaware of why it was important.

The children and grandchildren of Henrietta Lacks had grown up in the Baltimore area, mired in the poverty of being black in the end of the twentieth century. Drug abuse, alcoholism, and a lack of education meant that their lives were full of hardship and struggle, and not likely to get any better. When they found out that Henrietta’s cells were not only unique to science but being sold all around the world, this was news that they weren’t all prepared to cope with. Some saw it as a religious visitation, others as a massive conspiracy, and still others as just a way to make money off some poor black folk from the city.

The center of Skloot’s narrative is Deborah, Henrietta’s youngest daughter and the one Lacks who seemed most determined to find out what had happened. Deborah wanted so hard to find out what had happened to her mother that it almost killed her. The stress of not knowing – or, even worse, knowing but not understanding – took a heavy toll on her physical and mental health, and she was reluctant to talk to anyone at all about her mother. But it was Deborah that Rebecca had to convince if she was going to write this book, and in order to do that, she had to promise that the book would be about the woman Henrietta was, not just the cells she was famous for.

That’s probably what makes this book as readable and engaging as it is. While the science is handled well and smoothly, it’s not nearly as fascinating or emotionally gripping as the stories that she tells about the Lacks family. She shows us a family that is held together by the strength of their faith in their God and each other, and who are desperately trying to understand their place in the world and how Henrietta came to be what she was.

When the original cells were taken from Henrietta, it was done without her consent. She also had no say in what happened to those cells and how they were used, nor did any of her family find out the truth until years later. In an era long before the phrase “informed consent” was even coined, the medical establishment made massive scientific and financial gains, and in the meantime the Lacks were mired in poverty. As several of her children note, Henrietta has changed medicine forever, but her children can’t go see a doctor.

The struggle to understand must have been enormous. One of the moments that was most surprising and illuminating to me was when Henrietta’s son Zakariyya asked Rebecca, “What’s a cell?”

Just like Rebecca, I had to take a moment to absorb that question, and it put into sharp perspective the vast assumptions that I had made, coming from a well-educated white background. I thought that everyone at least knew what a cell was, but that assumption couldn’t have been further from the truth. Deborah and her family are people of minimal formal education who are trying to understand a topic that people study for their entire lives. Their dedication to this quest is so strong, and the struggle is so great that their attempt is nothing less than heroic, to my way of seeing things.

The story is still unfinished. HeLa is still out there, making news and causing trouble. The Lacks family is still living in poverty, although the new generation has been able to go to school and are aiming at a brighter future for themselves. And while patients’ rights to control what is done with their bodies and their tissues is improving, the law is still on the side of the doctors and hospitals. Medical ethics is a lot better than it was, but the fight is fierce, especially when there’s money involved.

This book is not just the story of cells or of science. It’s the story of a woman and her family, and how sometimes people get lost in the inexorable movement of scientific progress. Some parts are infuriating, some are heartbreaking, but the book is an illumination into what is sometimes sacrificed in pursuit of a better world.

—–

“When I saw those toenails, I nearly fainted. I thought, Oh jeez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.”

– Mary Kubicek, assistant to George Gey

Rebecca Skloot on Wikipedia

Henrietta Lacks on Wikipedia

The Immortal Life of Henrietta Lacks on Wikipedia

The Immortal Life of Henrietta Lacks on Amazon.com

The Henrietta Lacks Foundation website

The Lacks Family website

Rebecca Skloot homepage