The Real Immortal Life of Henrietta Lacks
When the book The Immortal Life of Henrietta Lacks came out in 2010, science writer Rebecca Skloot earned praise for her meticulous research and attention to detail and for her vivid way of bringing a nonfiction story to life in a way that read like a medical thriller. She also turned up the heat on a long-simmering conversation on the racism and misogyny built into the American system of practicing medicine.
To science, Henrietta Lacks, the spirited young mother of five, will always be known as “HeLa,” from the first syllables of her first and last names. Henrietta Lacks is now in many ways immortal, but that has been cold comfort to her family.
Coaxing humanity from science
What Skloot does, with deep sensitivity and respect for her subject and in fewer than 400 pages, is tell the story of a woman who otherwise might have never been more than a footnote to history as a research subject at The Johns Hopkins University.
Thinking about the book—and the short life and long afterlife of its subject—can shine a light on problems still facing us today, as we as a society learn to confront and challenge dehumanizing practices taken for granted only a generation or two ago.
A personal tragedy
Henrietta Lacks was born in 1920 in Virginia to a Black American sharecropping family working the same Virginia tobacco fields as their enslaved ancestors. In 1951 Lacks walked into The Johns Hopkins Hospital with vaginal bleeding. It turned out she had cervical cancer—a cancer that was possibly the most aggressive the hospital’s medical team had ever seen.
Without Lacks’ consent—or even her knowledge—the examining physician took a sample of her cancerous tissue and shared it with a colleague. (It would be years before the concept of a patient’s “informed consent” was even mentioned in the medical literature.)
Medical miracles
Since Johns Hopkins was a teaching and research hospital, patient tissue often found its way into the research labs. The colleague hoped to create a continuous chain of human cells that would all derive from a single tissue specimen—this is what’s known as an “immortal” line of cells. Up until that time, this had only been accomplished using animal cells.
Lacks’ cancer cells proved almost miraculously robust and amenable to cloning. For the first time, researchers had at their disposal a robust line of “immortal” human cells. These cells have lent themselves to a variety of investigations into major diseases, and through them, scientists have achieved previously undreamed-of success in creating innovative treatments.
Henrietta Lacks’ cells have contributed to breakthroughs in areas that include in vitro fertilization, genetic mapping, and vaccines against polio and some forms of cancer. They have even proven helpful in developing COVID-19 vaccines. In 2021, after COVID vaccines had rolled out around the world, 87-year-old Lawrence Lacks accepted an award from the United Nations honoring his mother’s memory.
A pauper’s grave
Henrietta Lacks died in agony at only 31 years old after receiving the standard radium treatment of the time. It’s vitally important to remember the human side of medicine, the patients whose illnesses and treatments have given rise to much of the modern medical miracles we now take for granted. This is particularly the case with Black patients, who, for generations, often received treatment little more dignified or respectful than that meted out to animal test subjects.
In the case of Henrietta Lacks, her grandchildren only learned about her as a person thanks to Skloot’s book. The author’s painstaking research brought Lacks to life for her descendants. She was a vibrant young woman who took pride in her appearance, always making sure the pleats in her skirts were properly pressed and that she put on her signature red lipstick before leaving the house. She also loved to cook.
Unfortunately, Henrietta Lacks ended up buried in an unmarked grave.
A family’s quest
Lacks’ daughter Deborah worked tirelessly with Skloot, supplying all the information she could to ensure her mother’s story would be told and traveling the country to learn more. A very young child when her mother died, Deborah is a big part of the reason her mother’s story is as well-known as it is. Deborah passed away in 2009 before she could see the book as a finished product.
In the 1970s, researchers contacted Lacks’ family, hoping to learn more about her genetic background. They even ran medical studies on Lacks’ husband and their children—again without informed consent—to gain more information about the family’s apparently remarkable genetics.
Family members asked for information about Lacks, but the researchers had none to offer other than what was stated in medical records. These researchers and physicians seemingly never tried to bridge the communication gap with a family completely untrained in science and only interested in learning more about what had happened to their mother.
After years of allowing Lacks’ memory—and her enormous uncredited contribution to science—to lie in the shadows, some of the medical institutions that developed multimillion-dollar biomedical treatments based on her cell line now acknowledge the error. Her estate has filed lawsuits asking for redress that would allow her descendants to share in the profits from this work. One of the most unjust ironies of this story is that over the years many members of Lacks’ family could not even afford health insurance.
The National Institutes of Health at least established a panel in 2013 to maintain ties with Lacks’ family, safeguard their privacy, and bring them into the conversation whenever researchers make requests to use the HeLa cell line. Three of Lacks’ family members serve on the decision-making panel, along with a team of scientists.
Asked at a Stanford University event what scientists need to do differently, Lacks’ grandson Alfred Carter, Jr. said pointedly that they need to always remember that “these are human beings that you are dealing with.”