Review of The Immortal Life of Henrietta Lacks by Rebecca Skloot

Our science teachers do a remarkable job with what limited resources, time, and support they have in school today. However, one of the many areas in which public science education could be improved is the way in which we examine the hidden systems that power science itself, and the way these systems intersect with our society. Cell lines are a great example of this. We learn about biomedical research in school, about cells, about vaccines—but the actual processes and procedures behind this research and this science are often opaque to us. No one ever told me that laboratories around the world are using cells descended from a sample taken from Henrietta Lacks, a Black woman living in Baltimore, Maryland. And even when it does get mentioned, it’s often mentioned as an isolated anecdote, a “by the way, did you know…” type factoid rather than the opening of a much larger, deeper conversation on race and ethics and consent in the shadow of capitalism.

There’s just so much to talk about here, and Skloot does an excellent job unearthing details and presenting the story in a precise, scientific, and human way. This is the type of journalism I like to read.

Basically, there are two stories here. The first is the story of how Henrietta Lacks’ cells became the HeLa cell line used the world over. The second is the story of the Lacks family today and Skloot’s role in untangling the facts in Henrietta’s story. Ordinarily, when it comes to science history books, I’m not enthusiastic about the author inserting themselves into the narrative. I’m not here for “Rebecca Skloot, Super Sleuth”. In this particular case, however, I understand why Skloot feels the need to document how she went about this process.

At the surface level, of course, there is just fascinating biology here. Take some cells. Try to grow them in culture. It doesn’t work. Why doesn’t it work? Hell if we know. Maybe it’s impossible. Take some more cells. They’re cancerous. Wait, they’re growing. They’re growing a lot. Well, fuck. We seem to have an immortal cell line on our hands.

In this respect, The Immortal Life of Henrietta Lacks chronicles the development of our understanding of cells in the twentieth century. It reminds us that science is this bizarre mix of years upon years of dedication and effort along with a whole lot of luck. Despite Skloot’s focus on Dr. George Gey as the discoverer/incubator of the HeLa cell line, she also makes it clear that even back then, science had already become a massive group undertaking. Were it not for George’s wife Margaret and Mary Kubicek and doubtless many other graduate students unnamed, there wouldn’t be a HeLa cell line as we know it. And of course, without Henrietta Lacks, none of this would have happened at all. Science is a collaborative endeavour—yet not everyone has equal awareness of their contribution, as Skloot points out.

This is the second layer to the book. Dig deeper, and we find that there is more going on here than just a story of awesome scientific discovery. Science is not neutral and is not objective because it is done by humans within our messy, biased society. Henrietta Lacks’ experience at Johns Hopkins exists within the context of a wider, white supremacist approach to science and medicine. We can argue whether or not individual people’s actions with Henrietta involved racism, but the fact remains that the Tuskegee experiments were happening contemporaneously. Medical research institutions in the United States, with the backing of the US government, valued Black lives less. Black people (and Indigenous people) have always been granted less, if any, bodily autonomy, particularly around areas like fertility. So it is striking, this fact that science owes this huge debt to a Black woman whose cervical cancer cells were used and grown without her knowledge or consent.

I think it’s really important that our science histories do not separate these questions of ethics from our retellings of great discoveries.

Then we come to the final layer, the framing narrative of Skloot becoming fascinated with Henrietta Lacks, deciding to write this book, and spending years tracking down Henrietta’s family, earning their trust, and doing research. This is probably the part of the book that is most questionable in terms of whether or not you’re going to enjoy it. Skloot herself acknowledges there is something uncomfortable about a white woman rocking up to write about a Black woman’s experiences at the hands of white doctors—yet that acknowledgement does not in and of itself dispel such discomfort. This is a distinctly different phenomenon from someone like Margot Shetterly writing about Black computers at NACA/NASA. I can’t help but wonder what this book could have been if a Black woman had written about Henrietta Lacks. And this is not to diminish Skloot’s work here—because it is fine work—but to point out the inherent irony of privilege that means she is the one to be telling Henrietta’s story.

It’s just messed up. Skloot shows us this impoverished, ignored part of the United States, and there are so many moments in this book that might break your heart. And that’s what a good book on science journalism should do. It shouldn’t be a dry rendition of the facts: it should make you feel for the humans whose stories are inextricably tied up to the science.

I like that Skloot presents the words of Deborah and the other Lackses as verbatim as possible, including their vernacular. One of the more chilling aspects of this book is how it’s clear that many of the people Skloot interviews have a very poor or basic understanding of biology and medicine. This is not their fault. This is the failure of the American education system. As someone privileged enough to have access to a fairly good education, it’s easy for me to forget that not everyone is so lucky. Would I understand everything a doctor said to me as they requested my consent to use my tissue samples? Probably not. But I would understand a lot more than Henrietta or any of her children would. And that’s sad and racist and unethical, and we need to do better. We don’t just need better ethics in science; we need better education. To that end, I think it’s interesting and laudable that Skloot helped found The Henrietta Lacks Foundation precisely to help fund the education of people who are related to people like Henrietta Lacks.

I highly recommend pairing The Immortal Life of Henrietta Lacks with The Vaccine Race: Science, Politics, and the Human Cost of Defeating Disease. It covers similar topics, focusing more on vaccination, and features the life of Leonard Hayflick (who also shows up in this book). These are the science books we need in our lives.