The Immortal Life Of Henrietta Lacks Summary and Review
by Rebecca Skloot
Has The Immortal Life Of Henrietta Lacks by Rebecca Skloot been sitting on your reading list? Pick up the key ideas in the book with this quick summary.Until recently, the interesting life of Henrietta Lacks, a woman who became famous for her HeLa cancer cells donation, has been shrouded in mystery.Over the past century, Henrietta’s cells have been vital to many amazing medical advances. But despite the fact that we can thank her cancer cures, seminal research on AIDS, and polio treatments, most of us don’t even know her name. What is even more upsetting is that a lot of people who are aware that there’s a woman behind these cures often get her name wrong, referring to her as Helen Lane or Helen Lacks.Rebecca Skloot’s book tells the real story behind Henrietta Lacks and her extremely helpful cells. In addition to discussing Henrietta’s difficult battle against a horrible disease - cancer, to which she unfortunately succumbed, the author also gives us amazing details about the history of the cells that ended up outliving Henrietta. Throughout the book, we will also learn more about gene-patenting and about the cell-culture industry.After reading our summary, you’ll understand why Skloot’s The Immortal Life of Henrietta Lacks is a must-read, especially if you are interested in black American history, medical history, and in gene patenting and cell research.Here are some of the most important things that we’ll discuss throughout our summary of Rebecca Skloot’s The Immortal Life Of Henrietta Lacks:
why cell strands have become essential to medical research and what their value is;
why doctors keep our cells in storage for years even if we only visited for a routine checkup;
why owners of plantations would often spread rumors among their slaves that doctors might abduct them in the middle of the night; and
why there’s a clear tension between the medical industry and black Americans.
The Immortal Life Of Henrietta Lacks Key Idea #1: A poor black American woman by the name of Henrietta Lacks dies of a very aggressive form of cancer.
In the 1920s, in a small town called Roanoake, a small black girl who would forever change medical science was born. Her parents named her Henrietta.Henrietta’s family worked on a tobacco farm, so she had to help out by doing different tasks such as hauling the leaves to South Boston and harvesting the plants.Although children used to work a lot back in the day, Henrietta found the time to play with her cousin Day.The two cousins had a very strong bond and they ended up getting married when Henrietta was 20. Soon enough they had children of their own. Because times were very difficult for small tobacco farmers, Day and Henrietta were struggling financially. In the hope of a better life, they decided to move to Sparrows Point, near Baltimore.In the early 1950s, about a decade later, Henrietta walked into a gynecology examination room, where doctors found a lump on her cervix.Henrietta was sent home after the doctors took a sample of her lump and sent it to the pathology lab for diagnosis. After her check-up, Henrietta returned to her daily routine of cooking for the family, looking after the children, and cleaning the house without putting too much thought into her medical examination.For a while at least, Henrietta’s life continued its regular course.When her doctors had the results of the biopsy, Henrietta learned that she was suffering from a very aggressive type of cervical cancer - stage I epidermoid carcinoma.Back then, cervical cancer was treated at John Hopkins with radium - a highly radioactive material. But while radium is great for killing cancer cells, unfortunately, it can also destroy the healthy cells that it comes into contact with. Indeed, this radioactive material is so powerful that, when administered in high doses, it can even cause severe burns.Because she didn’t really have any other options, Henrietta gave the doctors her consent for receiving the treatments that they deemed necessary. After giving her official consent for any treatments or surgery the doctors deemed necessary, Henrietta was once again led to the Johns Hopkins ward for colored women.It was there, in the colored women section of Johns Hopkins hospital that Henrietta went through many hours of intense radium exposure. But this was just the beginning, as Henrietta would continue to receive a lot of different treatments for her health problems.Even though these radioactive treatments were so intense that a large portion of her body had severe burns, they were mostly ineffective.Unfortunately, later that year, Henrietta Lacks died.
The Immortal Life Of Henrietta Lacks Key Idea #2: Despite Henrietta’s untimely death, her cells named “HELA” survived and were extremely useful.
In the early 1950s, doctors and scientists were desperately searching for new and effective ways to keep human cells alive. If they managed to keep the cells alive and outside the human body, they could then conduct essential experimental research. In the future, their research would cure diseases such as herpes, cancer, influenza, and polio.However, keeping the cells alive was extremely difficult. Whenever the experts would extract cells from the body and place them in a liquid called the culture medium, the great majority of cells would immediately die.A different approach was needed.As luck would have it, George Gey, the head of tissue culture at Johns Hopkins was also a visionary and an inventor. He searched for an effective way to keep cells alive tirelessly and eventually, came up with a solution that would become his most important innovation: the roller-tube culturing technique.George Gey’s invention involved a cylinder with many punched holes that would accommodate “roller tubes” (a special type of test tubes). This cylinder would allow a slow 24 hours a day rotation.Gey discovered that in order for human cells to survive outside the body, they needed constant rotation. This rotation had to perfectly mimick the motion that fluids and blood flow would generate in the human body.Although George Gey’s logic was flawless, Mary Kubicek, his assistant, did not think that Henrietta’s “HeLa” cells would survive.However, Kubicek, along with other fellow doctors and scientists were quite shocked when, a couple of days later, they found that not only were the “HeLa” cells alive, but they were also thriving. According to Kubicek’s notes, the cell cultures were doubling in number every 24 hours - much faster than they did while they were still in Henrietta’s body.But why did the cells survive and thrive? George Gey’s invention played a huge role, of course, but the fact that Henrietta’s cancer cells were extremely aggressive was also an important factor.By distributing the “HeLa” cells in several test tubes, Kubicek continued to study them and to run tests. Meanwhile, George Gey proudly announced his invention to his fellow colleagues. He told them that he had finally built “the first human cells that were immortal”. Shortly after, Gey began to share his innovations with other labs who would use them to find treatments for cancer and polio.
The Immortal Life Of Henrietta Lacks Key Idea #3: Researchers built a factory that produced HeLa cells in order to combat diseases like cancer and polio.
Shortly after Henrietta’s untimely death in 1951, preparations were underway for building a factory that would mass-produce HeLa cells. The main goal of this project was to find an effective cure for polio.But why did the scientists choose to mass-produce HeLa cells? They had several good reasons.First, producing HeLa cells and using them for research was quite cost-effective.Back then, the great majority of the research was done by using monkeys as test subjects. But this type of research was extremely problematic. Although animal tests were not considered unethical back then, they were extremely expensive. As a result, conducting large-scale research and experiments was very difficult for most labs.Second, the HeLa cells were much more effective than other cells. While regular cells would only thrive on a glass surface and would cease to grow as soon as they ran out of space, in a culture medium the HeLa cells would continue to grow.Third, having tested various options for cell transportation, George Gey found that HeLa cells were more resilient and survived being transported across the country. So, HeLa cells multiplied much faster than any other type of cells, thus, increasing their chances of survival during shipping.And finally, HeLa cells were perfect because they were extremely to the poliovirus, which was the main focus of many researchers.All of these reasons led the NFIP (National Foundation for Infantile Paralysis) to build a distribution center where they would grow HeLa cells and distribute them to other labs for tests and research.Ultimately, because the HeLa cells were mass-produced, they became exposed to a lot of different conditions quite quickly. As a result, they would be used by researchers for many different illnesses and not just polio. And soon, what began with George Gey’s cell culture isolation and was followed by mailing the cell cultures to other labs eventually became a very lucrative industry.
The Immortal Life Of Henrietta Lacks Key Idea #4: Despite having her cells used in research facilities spread across the globe, Henrietta was largely forgotten.
Henrietta’s HeLa cells became widely used in labs around the world. Unfortunately, as her cells became more and more important and famous, the woman who used to own them was quickly forgotten.In 1999, Rebecca Skloot happened to come across a series of interesting articles. The articles had previously been presented during a conference on HeLa cells that was held in one of the oldest black American universities - Atlanta’s Morehouse Medical School.Upon discovering the articles, Rebecca decided to contact Roland Pattillo, the conference organizer, who, surprisingly, was the only black student that George Gay ever had.Roland Pattillo explained that Henrietta’s story was forgotten, in part, due to her family’s reluctance towards talking about their relative or about her famous cells.But why were they reluctant?It appears that Henrietta’s family is convinced that the specialists extracted the woman’s cells without asking for permission and without informing her of their future plans for the cells.In addition to that, Henrietta’s family also happened to have an attitude of mistrust towards the medical industry that had stemmed from the many cases of exploitation of black Americans for medical studies. One such example is the 1930s Tuskegee experiments for syphilis. Back then, scientists were studying the ways in which syphilis would evolve from the first signs of infection until death. In order to succeed, the scientists used hundreds of uneducated black people. A lot of them were unaware that they had the disease, as the specialists hid this information from them and let the disease progress naturally and unchecked only to observe the symptoms. It is worth mentioning that even in the 1930s, syphilis could be cured with penicillin, an accessible treatment that a lot of black people did not get and ended up dying.After ensuring that Rebecca Skloot knew what to expect from Henrietta’s family, Patillo handed her their contact details and wished her luck. Soon after, Rebecca tried to contact Henrietta’s husband and children by phone in order to set up a meeting. Unfortunately, they stood her up.In consequence, the author decided to go to Virginia, to Henrietta’s hometown Clover, and get a feel of the surroundings. She also tried to locate potential relatives and familiars of the Lacks family. She decided that if she couldn’t meet with Henrietta’s husband and children, she should try to contact the woman’s cousins.
The Immortal Life Of Henrietta Lacks Key Idea #5: Rebecca learned that Henrietta’s family struggled to survive after the woman’s untimely death.
After Henrietta succumbed to an aggressive form of cancer, her family had financial problems. To make ends meet, Henrietta’s husband and cousin, Day, started working two jobs. Meanwhile, the family’s oldest son, Lawrence, was forced to leave school to take care of his younger brothers Joe and Sonny, and their sister Deborah.While going through these extremely tough times, the family also had to live with a burning question of what had happened to Henrietta. Even though they really wanted to know the truth, the children couldn’t ask their father, who had already told them not to rock the boat by asking such upsetting questions. He advised the children to simply accept that their mother is gone and go on with their lives.Years later, when Deborah, Henrietta and Day’s only daughter, was a high school student, she finally had the courage to confront her father and ask him about her mother’s death.But the only thing that her father was willing to reveal was that Henrietta Lacks died when Deborah was too young to remember.Decades later, when Rebecca Skloot went on her quest to find information about Henrietta and to search for her relatives she also contacted all the specialists that were involved in the woman’s case.And luckily, just as she had hoped, her search had positive results as she managed to come into contact with Henrietta’s family. Although reluctant to talk to Rebecca at first, they eventually opened up to her and gave her valuable information that she used to write this book.But it wasn’t just the author who gained new knowledge about Henrietta; the family, too, learned a great deal about Henrietta’s condition and the contribution she’d unwittingly made to the field of medicine.Questions, however, still remained: Why were many in the family still reluctant to talk to the author and the medical profession about HeLa?
The Immortal Life Of Henrietta Lacks Key Idea #6: BLACK AMERICANS HAVE A LONG HISTORY OF BEING WARY OF THE MEDICAL PROFESSION.
The author’s uphill battle in researching Henrietta’s life was in large part due to the family’s deep-seated lack of faith in her – a white reporter – to tell the story. Also, as mentioned previously, their hesitancy had its roots in a major distrust of and apprehension toward the medical field, because of its history with black Americans.However, even though there are many documented cases of black people being exploited in the name of science, a lot of rumors and stories that circulated among black Americans were pure fiction. Since the 1800s, there was one such story that was shared via black oral history and it was a terrifying one: black people were abducted by “night doctors” who would experiment on them.According to the story, Johns Hopkins doctors would often set out in the middle of the night and kidnap black people that were unfortunate enough to live near the hospital. These people would then be used by the doctors as subjects for different medical experiments.However, the main reason why these stories were so popular and so many people believed them was because white slave owners would use them repeatedly to scare their slaves. The slave owners hoped that by spreading these rumors, their slaves would be too scared to try to escape. They would even go as far as to dress up in white sheets and act as if they were spirits of abducted slaves or doctors who were looking for their next victim. The white sheets used to scare the unsuspecting slaves would eventually become the source of inspiration behind the famous hooded cloaks worn by Ku Klux Klan members. Although the stories about “night doctors” were made up, slaves had actually been used to test different surgical techniques or treatments.In the 1900s, a lot of research centers and hospitals would offer money for bodies. They needed a lot of human bodies for research. As a result, this practice greatly intensified the distrust that black people already had in regards to the medical field. And the fact that Johns Hopkins was located in close proximity to a poor black area also raised a lot of suspicion among the black population.As one would expect, the myth of the “black people abductions” and “night doctors” had a negative impact on the hospital’s reputation. After all, the main goal of the Johns Hopkins institution was to provide medical care and services to people who couldn’t afford it and these rumors were preventing potential patients from getting the help that they needed.It was this historical tension between the medical industry and black people that prevented Henrietta’s family from trusting researchers, doctors, and pretty much everyone else who showed any interest in the woman’s story.
The Immortal Life Of Henrietta Lacks Key Idea #7: Although Henrietta’s cells paved the way for many scientific discoveries, they were also a threat to research.
After hospitals and research centers all over the world received HeLa cells, specialists continued to analyze HeLa and other cell cultures in order to find cures for other types of medical conditions.But in 1966, the research world had a major problem.Stanley Gartler, a reputable geneticist, had been doing a lot of research that focused on finding new DNA sequences, or genetic markers, that would reveal the identity of individuals and species.During a conference on cell culture, in 1966, the geneticist revealed that, while he was looking for DNA sequences, he had discovered that he found one marker that was present in many different cultures that were commonly used in cell research. His conclusion was that Henrietta’s HeLa cells had contaminated all the cell cultures that they came into contact with.Although scientists were aware that different cell cultures could contaminate each other, they did not know how powerful the HeLa cells were and the contamination effect that they had on other cell cultures.As it turned out, the HeLa cells could pass from pipettes and unwashed hands to other cell cultures and could also attach themselves to dust particles. Furthermore, these cells were so strong that once they passed on to another culture they would quickly multiply and, thus, contaminate.Gartler’s findings changed the ways in which scientists conducted research on cell cultures and challenged their practices. He demonstrated that a large portion of cell culture research was a waste of money due to HeLa contamination.While the majority of specialists continued to work with the same cell cultures, a few of them took Gartler’s findings seriously and decided that they need to find an effective way to identify the DNA markings of HeLa cells. This led them to Henrietta’s family once again.
The Immortal Life Of Henrietta Lacks Key Idea #8: As researchers wanted to learn more about the HeLa cells, they needed the help of the Lacks family again.
When the HeLa cells started to contaminate other cell cultures, the doctors needed the help of Henrietta’s surviving family members. Luckily, most of them were Johns Hopkins patients, so obtaining their contact information was not difficult.The doctors needed to take cell samples from Henrietta’s family in order to be able to do some extra research on the current contamination and to find a better way to map the DNA sequences.In 1973, at the First Human Genome Mapping International Workshop held at Yale University, specialists determined that if they wanted to effectively locate de HeLa contaminants, they needed to locate Henrietta’s children.Victor McKusick, one of the scientists who studied HeLa, asked Susan Hsu, his postdoctoral fellow, to locate the Lacks family and to tell them that their blood samples are needed.Susan Hsu contacted Henrietta’s husband, Day Lacks, and explained the situation to him. She also asked him to get his children, Joe, Deborah, Sonny, and Lawrence together to give blood samples. Susan Hsu learned that Joe was in prison and was now calling himself Zakariyya, so she sent a nurse to collect his blood samples.While Susan Hsu claims that she gave Day all the essential details, explaining why she needed his blood, the man ended up tellin his children that the blood was necessary in order to find out whether they might be suffering from cancer. At the moment it is unclear what Hsu told Day and whether she was telling the truth or not.Around the same time, Henrietta's youngest daughter, Deborah, knowing that her mother died of cancer started to become concerned about getting the same disease. The arrival of doctors and their request for blood only increased her concern. Since Deborah was approaching the age that her mother had when she was diagnosed, she decided that she needed to learn more about Henrietta.She demanded her father Day to tell her everything that he could remember about her mother’s life, her condition, and her death. When she did not get the answers that she wanted so badly, she decided to go to Johns Hopkins hospital and ask around. The doctors took the opportunity to ask Deborah to give them additional blood samples for their research.And that’s how the researchers and doctors and Henrietta’s children came together to discuss the woman’s story.
The Immortal Life Of Henrietta Lacks Key Idea #9: The HeLa case is not unique as there have been many cases that led to concerns about cell donation privacy.
The case of Henrietta’s cells is, of course, an exceptional one. Henrietta was extremely unfortunate and got such an aggressive form of cancer. Her condition was incredibly helpful for and the research and development of treatments and cures for other diseases.But the case is not unique in that Henrietta’s cell sample situation could have happened to a lot more people. In fact, we know of at least two other cases.One case that is similar to Henrietta’s involves a man named John Moore who was an Alaskan pipeline worker.In 1976, John Moore was 31 as his health started to decline and he felt like he was going to die. Moore’s body was covered with bruises and his belly was swollen. Doctors told him that he was suffering from a very rare and aggressive form of cancer known as hairy-cell leukemia.David Golde, a cancer researcher who was working at UCLA treated John Moore and did spleen removal surgery on him. Moore’s spleen was 11 times heavier than a normal, healthy one and it weighed 22 lbs.While John Moore was under treatment for his condition, the researcher used his cells and marketed them under the name of “Mo” without ever informing him or his family.Once Moore found out about the research, he sued Golde for breaching his privacy and from making a profit by using his cells without getting his consent or at least informing him.Eventually, the researcher won the court case and continued to use John Moore’s cells and to market them as “Mo” cells.Another similar thing happened to Ted Slavin, who suffered from hemophilia. Due to his condition. Slevin's body was producing antibodies that were effective against hepatitis B. Medically and financially, these antibodies were extremely valuable.However, there is a huge difference between Slavin’s case and Moore’s. The doctor who was treating Slavin informed him that his antibodies could make a lot of money, so Ted Slavin gave his consent to market them. Slavin and Baruch Blumberg, a prize-winning virologist worked together and helped cure hepatitis B.But there is one more difference between Henrietta’s case, and the other two. Both Slavin and Moore were somehow able to contest or say something about the ways in which their cells were used. As Henrietta’s condition was fatal, she died before ever having the chance to claim property rights for her HeLa cells.As you’ll learn from the last chapter, the HeLa case has had a lot of consequences and has completely changed the laws linked to patients’ rights.
The Immortal Life Of Henrietta Lacks Key Idea #10: Who is the rightful owner of one’s cells?
By now, you are probably wondering whether the doctors’ and researchers’ actions in cases such as Henrietta’s were legal or not. – that is, isolating and marketing a patient’s cells without their consent – were illegal or not.In fact, the practice of harvesting a patient’s cells without informing them was completely legal until 2009.Why?The answer lies somewhere between consent and money.The United States tissue samples database is continuously growing. A 1999 report claimed that taking a conservative approach, there are over 300 million tissue samples stored in facilities from all over the country. These samples belong to more than 170 million people. Furthermore, in 2009, to the National Institute of Health invested over $13 million in establishing a tissue sample database for newborns.Nowadays, if doctors or researchers need to take tissue samples from their patients, they need to inform them and to get their consent. However, if they wish to keep samples from different diagnostic procedures they can do so without the patient’s consent.A lot of researchers claim that the current legislation is sufficient and that there is no need for more committees and institutions to investigate these aspects.There are others, however, who argue that the patients should have a fundamental right to know exactly how their cells will be used. Since there is a possibility that the cells might be used for intelligence studies, abortion research, weapon testing, and other controversial studies, people should be able to refuse.As for the commercialization and marketing of cells, this industry will keep on existing. But the issue of whether patients have a legal right to be informed of the ways in which their cells might bring profits remains unsolved.Currently, gene patenting remains the greatest worry of the research world, as it concerns the right of distribution and ownership of biological matter.President Bill Clinton’s National Bioethics Advisory Commission issued in 1999 a comprehensive report stating that tissue research lacked federal oversight. And, despite arguing that patients should have more rights regarding the use of their cells, the financial aspect was not discussed.
IN REVIEW: THE IMMORTAL LIFE OF HENRIETTA LACKS BOOK SUMMARY
What is the key message of Rebecca Skloot’s The Immortal Life of Henrietta Lacks?Henrietta Lacks’ HeLa cells were fundamental in finding a cure for polio and for other terrible diseases. While in treatment for an aggressive form of cancer, Henrietta Lacks was not informed that her cells would be used for research, and so she died without knowing about her vital role in medical science.What to read next: The Violinist’s Thumb by Sam KeanSam Kean’s The Violinist’s Thumb explores the double helix of life itself - the DNA. The book chronicles the major scientific discoveries that helped us understand how DNA works and what’s its role in the emergence and evolution of life on earth.