The compelling story of a single cell line that revolutionised medical and scientific research—cultured from cells taken unknowingly from an African American woman nearly 70 years ago.
Title: The Immortal Life of Henrietta Lacks
Author: Rebecca Skloot
Genre: Nonfiction (Biography)
Originally published: 2 February 2010
Finished reading: 30 November 2019
I’m sure you’ve heard of George Floyd—the one name that has been reverberating through social media and the press for days. But you may not have heard of another name, also belonging to an African American: Henrietta Lacks.
Henrietta did not die at the hands of white policemen. But she—and her family—had also been unfairly and sometimes cavalierly disregarded, as the scientific community sought only to advance their own interests.
Henrietta Lacks was a woman who unknowingly donated her cells at Johns Hopkins Hospital in 1951, beginning what was the first, and, for many years, the only human cell line able to reproduce indefinitely. Her cells, known as HeLa cells, remain a remarkably durable and prolific line of cells used in research around the world.
The above paragraph is taken from the Johns Hopkins Medicine page dedicated to Henrietta Lacks. The Immortal Life of Henrietta Lacks tells her story.
(This is another one of my lengthier book reviews, more of my reflections after reading the book than a concise recommendation. I’ve also included an amazing TED-Ed video as well as links for further reading on Henrietta and the HeLa cells. I do refer to a few parts of the book, so if you’re highly allergic to spoilers like me, you may wish to read the entirety of this review only after having read the book yourself.)
An intersection between science and the humanities
This book is, doubtless, an intersection between science and ethics; or rather, it is a fusion, so deeply intertwined are the two that they cannot be regarded as separate entities. Indeed, at the risk of sounding cliché, the ultimate aim of advancing science is to benefit humanity. And, arguably, it is only with a deep sense of humanity that we can continue to further our progress in science—and to steer it in the right direction. Therefore, we cannot endeavour to pursue one without the other.
The story of the HeLa cells is fascinating because of the profound significance of its discovery to science and medicine. It makes one wonder, if Henrietta’s cells had not been taken and cultured in George Gey’s lab, would science have advanced as rapidly as it did in the last seventy years? Would scientists have found other ways to carry out the same research? Would other cultured cell lines, though not immortal, have been an acceptable substitute for HeLa cells? I believe this is likely. However, there is no denying the tremendous importance of HeLa cells to science.
Our understanding of biomedical ethics has evolved greatly over the years
Perhaps more heavily, the weight of this story lies with the biomedical ethics involved. Unsurprisingly, many of the ethical practices and respect for patients’ rights that we now deem fundamental were not at all commonplace during Henrietta’s time. It thus becomes difficult to reconcile the currently established frameworks with the callous indifference of scientists and researchers in the past, when such principles were unheard of. What we may now perceive as reprehensible could have been common practice amongst the general scientific community decades ago.
Indeed, when Dr. Chester M. Southam began injecting patients with HeLa cells—cancer cells—without their knowledge in 1954, there was no formal research oversight in the United States. Many doctors testified before the Board of Regents and in the media on Southam’s behalf, saying they had been conducting similar research for decades. They argued that it was unnecessary to disclose all information to research subjects or get consent in all cases, and that Southam’s behaviour was considered ethical in the field. Southam’s lawyers argued, “If the whole profession is doing it, how can you call it ‘unprofessional conduct’?”
In the wake of this saga, scientists said medical research was doomed. In a letter to the editor of Science, one of them warned, “When we are prevented from attempting seemingly innocuous studies of cancer behaviour in humans … we may mark 1966 as the year in which all medical progress ceased.” From reading of this and other cases, including the controversy over John Moore’s cells, a recurring theme surfaces: the perennial tug-of-war between the principles of bioethics and the advancement of scientific research.
Since the turn of the century, politicians had been introducing state and federal laws with hopes of regulating human experimentation, but physicians and researchers always protested. The bills were repeatedly voted down for fear of interfering with the progress of science, even though other countries—including, ironically, Prussia—had enacted regulations governing human research as early as 1891.
Even in Moore’s case, this apprehension perpetuated. The press ran story after story quoting lawyers and scientists saying that a victory for Moore would “create chaos for researchers” and “[sound] the death knell to the university physician-scientist.” They called it “a threat to the sharing of tissue for research purposes,” and worried that patients would block the progress of science by holding out for excessive profits, even with cells that weren’t worth millions like Moore’s.
Ultimately, the Supreme Court of California ruled against him. It said that ruling in Moore’s favour might “destroy the economic incentive to conduct important medical research,” and that giving patients property rights in their tissues might “hinder research by restricting access to the necessary raw materials,” creating a field where “with every cell sample a researcher purchases a ticket in a litigation lottery.”
Yet, upholding ethical principles and practices and the continued advancement of science do not have to be mutually exclusive. Following Southam’s case, despite scientists’ fears, the ethical crackdown did not slow scientific progress. In fact, research flourished—much of it involving HeLa.
Today, top medical institutions and research facilities around the world are committed to upholding the highest bioethical standards. And scientific progress has only accelerated.
Medical ethics continue to be of great relevance today
Henrietta’s story spotlights several oft-discussed bioethical issues, including informed consent, privacy of medical records, and communication with tissue donors and research participants. There have since been paradigm shifts in the way these issues are approached and regulated.
Nevertheless, medical ethics remains an important pillar of biomedical research and discovery. Contentious cases continue to emerge, with a groundswell of debate fuelled by multiple conflicting views. Among them are the cases of Charlie Gard and Alfie Evans, as well as dissension over the applications of biotechnology, particularly the use of genetic engineering (CRIPSR/Cas9) to modify the human genome. As artificial intelligence invades into the medical field, new forms of privacy concerns are arising.
It is evident, therefore, that as scientific and biomedical breakthroughs emerge at an exponential pace, propelled by the advent of increasingly sophisticated technologies, ethical quandaries will only continue to arise—many of them without precedent. To confront these quagmires, science will have to look to the humanities more than ever before.
Rebecca Skloot tells stories not just of Science, but of people
Beyond uncovering the intriguing science behind the HeLa cells and the innumerable scientific and medical breakthroughs they have abetted, it was the element of humanity infused into the story that stood out to me most poignantly.
Rebecca Skloot’s persistence to uncover the HeLa story was moving; it was this same unrelenting attitude—coupled with her tact, sensitivity, and respect—that eventually won her the trust of the Lacks family and conceived a lasting friendship with Henrietta’s daughter, Deborah Lacks.
It was also extremely heartwarming to see Deborah’s transformation as she and Rebecca together probed deeper into the unknowns of Henrietta’s story. There were many stirring scenes in the book, but one in particular remains in my mind—when the Lackses followed Skloot into the world of science, just as she had followed them into the world of faith.
When two seemingly disparate worlds blend into one
In 2001, an Austrian researcher at Johns Hopkins named Christoph Lengauer invited the family to his lab. When Deborah and her brother Zakariyya visited, he led them to the basement, where they “saw” their mother for the first time. Warming frozen test tubes of HeLa in their hands and watching in wonder as a cell divided into two under a microscope, it was a life-changing experience for both Deborah and Zakariyya.
Scientists don’t like to think of HeLa cells as being little bits of Henrietta because it’s much easier to do science when you dissociate your materials from the people they come from.
I was moved by Lengauer’s sincerity and the compassion he showed towards the Lacks family. I respect him for that—for reaching out, for wishing to thank the person whose cells were the foundation of his work—especially when most scientists would rather ignore the messy human provenance of these materials and see them only as cells for biological experimentation.
“Scientists don’t like to think of HeLa cells as being little bits of Henrietta because it’s much easier to do science when you dissociate your materials from the people they come from,” a researcher named Robert Stevenson tells Skloot in one of the many ethical discussions seeded throughout the book.
All in all, this book has fused both science writing and the human element resplendently, while raising pertinent questions regarding bioethics that has far-reaching implications for science as a whole—as much in history as in our future.
My favourite quotes from this book
(All quotes are arranged in chronological order as they appear in the book, with the chapters indicated in parentheses.)
We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph. — ELIE WIESEL from The Nazi Doctors and the Nuremberg Code
― Rebecca Skloot, The Immortal Life of Henrietta Lacks (Epigraph)
“She’s the most important person in the world and her family living in poverty. If our mother is so important to science, why can’t we get health insurance?”
― Rebecca Skloot, The Immortal Life of Henrietta Lacks (Chapter 21: Night Doctors)
When he asked if she was okay, her eyes welled with tears and she said, “Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.”
― Rebecca Skloot, The Immortal Life of Henrietta Lacks (Chapter 33: The Hospital for the Negro Insane)
“Like the Bible said,” Gary whispered, “man brought nothing into this world and he’ll carry nothing out. Sometime we care about stuff too much. We worry when there’s nothing to worry about.”
― Rebecca Skloot, The Immortal Life of Henrietta Lacks (Chapter 35: Soul Cleansing)
She stroked Davon’s hair. “I don’t know how I’m going to go,” she said. “I just hope it’s nice and calm. But I tell you one thing, I don’t want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that’s just sad.” Then she smiled. “But maybe I’ll come back as some HeLa cells like my mother, that way we can do good together out there in the world.” She paused and nodded again. “I think I’d like that.”
― Rebecca Skloot, The Immortal Life of Henrietta Lacks (Chapter 38: The Long Road to Clover)