Rebecca Skloot's "The Immortal Life of Henrietta Lacks" tells the remarkable true story of a woman whose cells have been used in countless medical breakthroughs, yet whose own life and legacy remained largely unknown for decades. This book interweaves the tale of Henrietta Lacks, a poor African American tobacco farmer who died of cervical cancer in 1951, with the story of her cells - known as HeLa - which became the first "immortal" human cells grown in culture. These cells have been vital to developing the polio vaccine, gene mapping, in vitro fertilization, and many other scientific advances.
Skloot spent years researching Henrietta's story, interviewing her surviving family members and tracking down details of her life and death. In doing so, she uncovers a fascinating and often troubling history at the intersection of race, ethics, and scientific progress in America. The book explores complex questions about medical consent, exploitation, and who owns our biological materials, while also painting a deeply human portrait of the Lacks family and their quest to understand their mother's legacy.
Henrietta's Early Life and Diagnosis
Henrietta Lacks was born in 1920 in Roanoke, Virginia. She grew up working on her family's tobacco farm alongside her cousin Day, whom she later married. As a young woman, Henrietta and Day moved to Turner Station, near Baltimore, in search of better economic opportunities.
In early 1951, Henrietta went to Johns Hopkins Hospital - one of the only hospitals in the area that treated black patients - because she had found a lump on her cervix. A biopsy revealed she had cervical cancer. The standard treatment at the time was painful radium therapy, which Henrietta endured over the following months.
Unbeknownst to Henrietta, during her treatment, doctors took samples of her cervical cells without her knowledge or consent. This was a common practice at the time, especially with poor or minority patients. The cells were sent to the lab of Dr. George Gey, who had been trying unsuccessfully to grow human cells in culture for years.
The Birth of HeLa Cells
In Dr. Gey's lab, something unprecedented happened - Henrietta's cancer cells didn't die like all the other human cell samples. Instead, they kept dividing and multiplying at a remarkable rate. Dr. Gey realized he had finally achieved the "immortal" human cell line researchers had long sought. He began sending samples of the cells - which he labeled "HeLa" after the first two letters of Henrietta's names - to other labs.
Meanwhile, Henrietta's condition rapidly deteriorated. The cancer spread throughout her body, causing immense pain. She died on October 4, 1951, at just 31 years old, leaving behind her husband and five children. Her family had no idea that as they grieved, Henrietta's cells were already being cultivated in labs across the country.
The HeLa Cell Revolution
The timing of the HeLa breakthrough was fortuitous for medical research. Scientists were desperately seeking ways to grow the poliovirus in order to develop a vaccine, and HeLa cells proved to be the perfect medium. Jonas Salk used the cells to test his polio vaccine before its famous field trial in 1954.
Soon, a veritable HeLa cell factory was established to mass produce the cells for research. They were used to study the effects of radiation, develop techniques for freezing cells, and test how human tissue reacts in space. HeLa became a standard laboratory workhorse, leading to advances in cancer research, AIDS research, gene mapping, and countless other areas.
The cells' ability to survive shipping made it possible to easily distribute them to labs worldwide. They multiplied so rapidly that all a lab needed was a single vial to grow their own huge quantities of cells. Before long, HeLa had become the first standardized "human" test subject - a development that revolutionized biological research.
The Lacks Family Left Behind
As HeLa cells spread around the world, Henrietta's own family remained unaware of their existence. Her children were young when she died, and her husband Day struggled to care for them on his own. The family faced poverty and other hardships in the years following Henrietta's death.
It wasn't until 1973 - over 20 years after Henrietta's death - that the Lacks family learned about HeLa cells. Researchers wanted to do genetic testing on Henrietta's children to learn more about the cells, and a family friend who worked at the National Cancer Institute told Day about HeLa. The family was shocked and confused to learn that part of their mother was still alive in labs around the world.
Henrietta's daughter Deborah, in particular, became obsessed with learning more about her mother and her cells. But the family's attempts to get information were often frustrating. Many scientists and institutions were reluctant to engage with them or share details. The family also struggled to understand the complex science behind HeLa.
Adding to their distress was the knowledge that HeLa cells were being bought and sold for profit, while the Lacks family couldn't even afford health insurance. This raised difficult questions about ethics, consent, and compensation in medical research.
A History of Mistrust
The Lacks family's wariness toward the medical establishment was rooted in a long history of exploitation and mistreatment of African Americans by doctors and researchers. Skloot explores how stories of "night doctors" kidnapping black people for experiments had circulated since slavery times. While often exaggerated, these tales reflected very real abuses that occurred.
The infamous Tuskegee syphilis study, in which researchers withheld treatment from black men with syphilis in order to study the disease's progression, was just one of many unethical medical experiments conducted on African Americans without their knowledge or consent. This history made many black Americans deeply distrustful of doctors and medical researchers.
Johns Hopkins Hospital, where Henrietta was treated, had a particularly fraught relationship with the surrounding poor black community. While the hospital's mission was to provide care for those who couldn't afford it, many locals viewed it with suspicion and fear. This context helps explain the Lacks family's reluctance to engage with scientists interested in HeLa cells.
The HeLa Contamination Crisis
In the 1960s, a major problem with HeLa cells came to light. Geneticist Stanley Gartler discovered that many cell lines being used in labs around the world were actually contaminated with HeLa cells. The aggressive HeLa cells could float through the air on dust particles and quickly overtake other cell cultures.
This revelation threatened to undermine years of research conducted on what scientists thought were diverse cell types. If most cell cultures were actually just HeLa, how valid were studies done on them? The contamination crisis highlighted both the remarkable vitality of HeLa cells and the need for better safeguards in cell culture work.
To address the contamination issue, researchers needed to develop ways to conclusively identify HeLa cells. This led them back to the Lacks family in search of genetic samples to compare against HeLa. In 1973, researchers asked Henrietta's children for blood samples, telling them it was to test for cancer genes. In reality, it was to map HeLa's genome.
This incident further eroded the family's trust, as they felt they had been misled about the purpose of the testing. It also stoked Deborah's fears about inheriting her mother's cancer. The family's confusion and lack of clear information about HeLa only added to their emotional turmoil.
The Question of Consent
The story of HeLa cells raises complex ethical questions about informed consent in medical research. When Henrietta's cells were taken, it was common practice for doctors to use patient tissues for research without explicit permission. There were no established protocols for informing patients or obtaining consent.
However, as the field of bioethics developed, the rights of research subjects became a more prominent concern. The question of whether patients should have control over how their tissues are used - even after the samples are removed from their bodies - remains contentious.
Skloot explores several other cases that highlight these issues. In one, cancer patient John Moore sued when he discovered his doctor had developed and patented a lucrative cell line from his tissues without his knowledge. Moore ultimately lost the case, with the court ruling that patients don't retain rights to tissues once they're removed.
In contrast, Ted Slavin, a hemophiliac whose blood contained valuable antibodies, was informed by his doctor about the potential value of his blood. Slavin was able to sell his serum to researchers and use the proceeds to fund hepatitis B research. His case shows how patients can potentially benefit when fully informed about the value of their biological materials.
These examples underscore the evolving nature of medical ethics and patient rights. While practices have improved since Henrietta's time, many questions remain unresolved about ownership of human tissues used in research.
The Lacks Family's Journey
A significant portion of the book focuses on Skloot's own interactions with the Lacks family as she researched Henrietta's story. Initially, the family was reluctant to speak with her, having been burned by journalists and researchers in the past. Skloot spent years slowly building trust, particularly with Deborah.
Through her conversations with the family, Skloot paints a vivid picture of how Henrietta's legacy has affected them. Deborah, especially, is haunted by questions about her mother and the cells. She struggles with health anxiety, wondering if she'll develop the same cancer that killed Henrietta. The family's limited education makes it difficult for them to fully grasp the scientific concepts involved.
Skloot accompanies Deborah on emotional journeys to learn more about Henrietta and HeLa cells. They visit the "home house" in rural Virginia where Henrietta grew up, and later tour a lab to see HeLa cells under a microscope. These experiences are profound for Deborah, helping her connect with the mother she barely knew.
The book also delves into the troubled life of Henrietta's youngest son, Joe (who later changed his name to Zakariyya). His anger over his mother's death and the use of her cells manifests in violence and substance abuse. Skloot's attempts to interview him are initially met with hostility, but eventually lead to some measure of reconciliation.
Through these personal stories, Skloot illustrates how scientific advances can have far-reaching and unexpected impacts on the families involved. The Lacks family's struggle to come to terms with Henrietta's legacy is a poignant thread throughout the book.
The Debate Over Tissue Rights
As the story of HeLa cells became more widely known, it sparked debates in scientific and ethical circles about the rights of tissue donors. Should patients have a say in how their cells and tissues are used after they're removed? Do they deserve compensation if those materials lead to valuable discoveries or products?
These questions have become increasingly relevant in the age of biobanking, where millions of tissue samples are stored for future research. While patients now typically sign forms consenting to the use of their tissues in research, many argue this doesn't go far enough in protecting donor rights.
Skloot explores various perspectives on these issues. Some scientists argue that overly strict regulations would impede important research. They contend that since tissues would otherwise be discarded, using them for research that could benefit society is ethical.
Others advocate for greater transparency and control for donors. They argue that people should have the right to decide whether their tissues are used in research they might object to on personal or religious grounds. There are also concerns about privacy, as genetic information from tissues could potentially be used to discriminate against individuals or groups.
The question of financial compensation is particularly thorny. While some say it's only fair for donors to share in profits from their tissues, others worry this could lead to exploitation of vulnerable populations or create perverse incentives in healthcare.
Skloot presents these debates evenhandedly, acknowledging the complexity of the issues involved. She notes that finding the right balance between advancing medical research and protecting individual rights remains an ongoing challenge.
HeLa's Continuing Impact
The book brings the story of HeLa cells into the present day, exploring their continued importance in medical research. HeLa cells have been used in over 60,000 scientific studies, contributing to numerous medical breakthroughs. They've helped develop drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson's disease, among many others.
HeLa cells were crucial in developing the human papillomavirus (HPV) vaccine, which protects against the virus that caused Henrietta's cancer. In a poignant twist, this vaccine has the potential to spare many women from Henrietta's fate.
The cells continue to be a workhorse in labs around the world. They've been used to study the effects of zero gravity, cosmetics, and gene mapping. Scientists have even used HeLa to study the human genome, sequencing the DNA of Henrietta's cancer cells.
However, the story of HeLa also serves as a cautionary tale about the need for ethical oversight in scientific research. It has influenced policies on informed consent and the use of human tissues in research. Many institutions now have specific protocols for obtaining permission to use patient samples and informing them about potential commercial applications.
The legacy of Henrietta Lacks and HeLa cells continues to evolve. In 2013, the National Institutes of Health reached an agreement with the Lacks family to give them some control over access to the HeLa genome data. While not financial compensation, this agreement acknowledges the family's right to have a say in how Henrietta's genetic information is used.
The Lacks Family Today
Skloot concludes the book by reflecting on how telling Henrietta's story has impacted her own life and that of the Lacks family. She describes the close relationship she developed with Deborah and other family members over years of research and interviews.
The publication of the book brought widespread attention to Henrietta's story. This has been a mixed blessing for the family. On one hand, they're gratified that Henrietta is finally receiving recognition for her unwitting contribution to science. Several institutions have established scholarships or programs in Henrietta's name, and there have been efforts to educate the public about HeLa cells and the ethical issues they raise.
On the other hand, the attention has sometimes been overwhelming for a family that had long lived in relative obscurity. They've had to navigate media interest and speaking requests, while still grappling with their own complex feelings about Henrietta's legacy.
Skloot notes that many of the Lacks descendants still struggle financially and lack access to the kind of healthcare that HeLa cells have helped advance. This irony underscores ongoing issues of inequality in healthcare and medical research.
Despite these challenges, many family members have become advocates for patient rights and education about HeLa cells. They've spoken at scientific conferences and to student groups, helping to put a human face on this remarkable scientific story.
The book ends on a hopeful note, with family members finding some measure of peace and pride in Henrietta's legacy. While many questions remain unresolved, the telling of Henrietta's story has brought a degree of recognition and closure to a family long kept in the dark about their mother's incredible scientific afterlife.
Final Thoughts
"The Immortal Life of Henrietta Lacks" is a multifaceted exploration of science, ethics, race, and family. Through the lens of one woman's cells, Skloot examines some of the most profound questions facing modern medicine: How do we balance scientific progress with individual rights? What do we owe to the people whose bodies make that progress possible? How do we address the historical injustices that have shaped attitudes toward medical research in minority communities?
The book doesn't offer easy answers to these questions, but it forces readers to grapple with their complexity. By humanizing the story of HeLa cells - showing us the woman behind the science and the family impacted by her legacy - Skloot brings these abstract ethical issues into sharp, emotional focus.
Ultimately, "The Immortal Life of Henrietta Lacks" is a testament to the far-reaching consequences of scientific discovery. It shows how a single contribution to medical research - taken without knowledge or consent - can reverberate through decades, affecting not just the course of science but the lives of individuals and families.
The book serves as both a celebration of scientific progress and a call for greater ethical consideration in how that progress is achieved. It reminds us that behind every tissue sample or cell culture, there is a human story. In bringing Henrietta Lacks' story to light, Skloot has ensured that future discussions of bioethics and patient rights will be informed by a fuller understanding of the human cost and potential of medical research.
As science continues to advance, pushing into new frontiers of genetic research and personalized medicine, the lessons of Henrietta Lacks' story remain vitally relevant. Her cells have touched nearly every realm of medicine, and her story touches on issues that will only become more pressing in the years to come. In this way, Henrietta Lacks truly has achieved a form of immortality - not just through her ever-dividing cells, but through the ongoing impact of her remarkable story.