I’m going to make a fairly bold statement that most of you haven’t heard of Henrietta Lacks. I sure hadn’t until I listened to Rebecca Skloot’s audiobook: The Immortal Life of Henrietta Lack’s. An Amazon #1 Best Seller, a #1 New York Times Bestseller, and I’m sure countless other awards. The point is I, along with thousands of others, became utterly fascinated by a women’s immense contribution to science, whose untimely passing in 1951, aged only 31, led to breakthroughs in science we can be hugely thankful for today. Here’s the Immortal Life of Henrietta Lacks Summary…
Rebecca’s book is amazing – over a decade’s worth of research went into understanding the women behind the breakthroughs in science; specifically cell culture: HeLa cells. Shipped in the TRILLIONS all over the world to research laboratories and pharmaceutical companies.
The HeLa cell lines are the first-ever strain of cells artificially grown in a laboratory, thriving for longer than they ever would in a human being. They’ve gone on to create medical breakthroughs in treatment for Parkinson’s, polio vaccine, herpes, and ironically, cancer itself…
It’s an amazing story that’s masked in controversy.
- How can a multibillion-dollar industry be built upon a woman whose name wasn’t disclosed to the public until 1975?
- Were her cells taken from her with consent?
- How did Henrietta die?
- How could her family live in poverty whilst others profited to multi-millionaire status?
- What happened to Henrietta’s estranged daughter, Elsie?
Discover all this and more, now…
How do cells live forever?
There is quite a cruel irony here. It only takes one error in mitosis (cell division), which is essential for cell regeneration, and 2 trillion cells divide every day. ONE error can have disastrous implications.
But I do want to make one important distinction. It’s not Henrietta’s ‘original’ cells that live on. It’s her cancer cells. You see, cancerous cells will live indefinitely so long as they have a living host. It’s remarkable. They will multiply to infinity and beyond. That’s why you’ll constantly hear of stories, or perhaps friends and loved ones, or yourself, whereby cancer has spread to different areas of the body. Now of course, if the poor human host succumbs to the disease, the cancer cells die too.
If not, they’ll live forever, and that’s the case with Henrietta and the making of the eloquent title of the book: The Immortal Life of Henrietta Lacks.
Her cancer cells are grown in culture, meaning, the cultivation of tissue cells artificially by supplying nutrients. Without trying to sound too graphic, that’s what cancer cells are doing in a human body. If you isolate cancerous cells from a human body and put them in artificial culture, readily supplying nutrients and proper ambient conditions, they’ll multiply, and multiply, and multiply…
The women behind the cells
Born August 1st, 1920 in Virginia as Loreta Pleasant. Nobody knows how and why she changed her first name. She married her cousin Day Lacks (common in black communities in the Southern states at the time), who was 25, and Henrietta was 20. The pair were African American tobacco farmers and had 5 children: Deborah, Elsie, Lawrence, David (known as Sonny) and Zakariyya (born Joe Lacks but changed his name).
Henrietta was a simple, easygoing lady that didn’t like the city. She loved blues music and her favourite musician was Bennie Smith. Her and her cousin, Sadie, would sneak out at night when Day was on nightshift and the kids were put to bed for a night on the town, and dance the night away!
Henrietta confided in Sadie, along with her other cousin Margaret. They were very close and would tell each other everything. That’s why they were the first to know about Henrietta’s untimely diagnosis…
Diagnosis & treatment, 1951
“I got a knot”.
Henrietta told Sadie and Margaret about the tumour that was growing inside her.
She was already secretly getting radiation treatment at Johns Hopkins, Maryland (bordering states with Virginia). The prestigious hospital was named after Johns Hopkins himself, a successful American entrepreneur.
Johns Hopkins was born on a tobacco plantation in Maryland and made millions as a banker, grocer and selling his own brand of whisky – in 1873 he donated 7 million dollars to start a hospital and medical school, which was operational by 1876.
He never married or had children. The Johns Hopkins medical school was mainly built for the poor, regardless of race. He seemed like a great man, ahead of his time.
Anyway, let’s get back on track.
Henrietta showed Saide and Margaret the singed skin on her stomach as the result of the radiation treatment. I think it’s one of the most touching moments of the book. Henrietta, Sadie and Margret were together under normal circumstances for the last time, atop a Ferris wheel at a carnival. She waited until their cage spun to the top, momentarily paused, to reveal she had cancer.
Cancer treatment, 1951
Since the early 1900s, Johns Hopkins had been using radium treatment and Dr Howard Jones showed that it was effective for invasive cervical cancer. It’s just as well because Henrietta’s tumour had shiny purple lesions that would bleed at the faintest of touches.
Henrietta received the same procedure. It seemed standard enough Dr Jones: assuming the cancer tissue would die like any other. He shaved off 2 pieces of cervical tissue from Henrietta’s tumour (one piece cancerous and one non-cancerous) and embedded a radium plaque, along with a catheter so she could still freely urinate.
And that was it.
A fairly standard process at the time for a skilled doctor. Henrietta went about her life with the newfound hope of treatment to her cervical cancer.
HeLa is born
I think it’s important to mention George Otto Gey now. A cell biologist at Johns Hopkins at the time. He served over 35 years there. And essentially, his greatest ever scientific contribution was due to Henrietta Lacks. Gey and his team would experiment on cancerous and diseased tissue cells taken from patients upon autopsy.
Gey worked with 2 key scientists: Mary Kubicek and Margaret Gey, his wife. By this time, Gey’s lab had taken countless specimens in for testing but none had successfully worked. Meaning, none of the cells lived for long in their culture process.
The thing is, growing cell cultures is a delicate process, especially in 1951. Issue arise with contamination from a persons breath, dust particles in the air etc.
It just so happened to be that Henrietta’s cells were the first to be cultivated successfully, without a host. Mary Kubicek made the culture medium, put Henrietta’s cervical tissue onto chicken blood clots, put into test tubes and an incubator. Now Mary wasn’t particularly hopeful. She’d seen countless cell proliferation attempts fail. Why would Henrietta’s be any different?
But it was different. When she went to check on the test tubes the next morning, little growths of what looked like “fried egg whites” appeared. They started to double each day and Mary had to found a larger storage solution to save the cells.
Mary was quoted saying her cells were “spreading like crabgrass!”.
It was at that point, in 1951, that cell culture was born.
Henrietta on borrowed time
Henrietta’s cancerous cervical tissue supplied upon autopsy to the Gey lab made the first HeLa cell culture possible, bringing forth medical marvels in the years to come.
One man’s loss is another man’s gain I suppose.
The reason I say this is because although the Gey lab had hit the jackpot, it was at the expense of Henrietta’s life.
The ironic thing is Geroge Gey and Henrietta never met…
Gey wouldn’t have been there during the autopsy either. He was simply handed the tissue for his team to work on.
Shortly before her death, Henrietta told Dr Howard Jones and the faculty that her cancer was getting worse. Now, with the benefit of hindsight, if the doctors listened to Henrietta early on, would she have lived passed 31? Impossible to say. Perhaps she was already inoperable. The fact of the matter is this was the 50s…
Racial discrimination was rife.
I think doctors were less inclined in general to disclose information with their patients because they simply wouldn’t understand the medical jargon. And they didn’t want to scare them. Were doctors on an elevated pedestal back then?
But that’s just my opinion and the feelings I get from listening to the audiobook.
Nevertheless, being black wouldn’t have helped her cause. No doubt, she was probably treated differently and with less importance. Racial segregation was apparent in Johns Hopkins and hospitals across the country, where statistically they had higher mortality rates in the African American wards.
We’ll never know if racial discrimination accelerated her death. Regardless, a rapid health decline was apparent. She was vomiting daily with a fever of 105 degrees Fahrenheit! The Xrays revealed a stony hard mass, with new tumours appearing daily. She’d reached an inoperable stage, yet a few weeks prior, the Xrays detected nothing. She appeared healthy on the scans, but far from it in reality. Henrietta received one initial dose of chemotherapy and the doctors were convinced she was cured, as there were no signs of detection of cancer on her second appointment. They even fixed her deviated septum in a separate procedure that had disrupted her breathing all her life.
I suppose, ignoring the root cause, festering away…
Henrietta was receiving radiation treatment but she felt it was making her cancer worse. Something wasn’t right. She had period blood for weeks, and her urine felt like “broken glass” every time. By this stage, Henrietta was probably infertile, which Dr Howard Jones did not tell her. If she’d lived, this would have devastated her.
Life after death
At 12:15 am, October 4th 1951, Henrietta died in her hospital bed at Johns Hopkins.
She was 31.
The cause of death was terminal uraemia, a type of blood poisoning due to the buildup of toxins that would normally be flushed away in urine. But Henrietta’s tumours developed so large that they blocked her urethra, preventing her from urinating and excreting waste compounds, which her catheter couldn’t even do towards the end.
Before her death, she looked 6 months pregnant because she was so bloated from the overgrowth of tumours on the intestines and stomach. A real sad state of affairs I must admit.
By this point, Gey wanted as many samples he could get his hands on.
Thereafter, they cut tissue from her liver, vagina, lungs and appendix after getting approval from Day, her husband, who at first said no but was convinced once he found out the research could help save countless lives, including his children’s, he said yes. Day granted them permission but with hindsight, I don’t think he knew what he was signing up for. I don’t suppose in 1951 he could possibly imagine the revelations in the years and decades ahead.
Henrietta’s funeral was held in her hometown of Clover, Virginia. Sadie found the funeral incredibly gruelling when she opened the pine coffin to see Henrietta’s toes, overgrown and with no varnish. You see, one of Henrietta’s favourite things to do was to paint her toes. They were immaculate 24/7. Her family said she would paint them every day, come hell or high water.
The fact that Sadie saw her toenails in such a state, she said:
“Lord, Hennie must have hurt somethin’ worse than death”
What became of Henrietta’s family?
You would think that Day Lacks would take care of the kids after Henrietta’s passing, but here’s what happened…
Shortly before Henrietta’s death, Elsie Lacks was moved to Crownsville, a Maryland hospital that catered for the disabled. Now, back then, it was coined a hospital for the ‘Negro insane’. A shocking description nowadays but part of the times in the 1950s. As were the disturbing medical procedures, and how Elsie fell victim to it. I’ll discuss this later, and how Deborah came to know the truth of Elsie’s passing. I would say it’s the most emotional part of the book. Elsie spent 5 years in Crownsville from age 10 onwards, as a permanent resident.
She passed away at Crownsville aged 15, in 1955.
Sonny, Joe and Deborah were raised by Ethel, who was another on Henrietta’s cousins. This is nothing like the bond between Henrietta, Sadie and Margaret.
Ethel hated Henrietta, mainly because of Ethel/s husband, Galen’s infatuation with Henrietta. Everybody loved her, and Ethel was jealous. She could tell Galen had the eyes for Henrietta.
So what did she do?
She decided to make Sonny, Joe and Deborah’s lives as miserable as possible. Day was exactly the best of fathers, to begin with, heck, he was never faithful to Henrietta and most likely gave her HPV (human papillomavirus), which is likely the cause on Henrietta’s cancer. Anyway, more on that later…
The point is Day wasn’t around. He did a fairly noble thing and moved away for work, in a bid to make more money and have a better life for his family. He moved north to Turner Station, Baltimore, Maryland.
Lawrence, the oldest of the 5 kids and one of the most respected and highly regarded members of the Lacks family, was old enough that he and his wife, Bobette, had already moved away and started their own lives.
This left Sonny, Joe and Deborah in the hands of Ethel and Galen. And oh boy, was it rough. They were woken at the crack of dawn to do the cooking, cleaning and work the tobacco fields. They were given 1 biscuit/day and a measly dinner, with locks put on the refrigerator.
Joe got it particularly bad, which would explain his rebellious nature and troubled future that lay ahead. He was beaten with an extension cord so badly he had to go to the hospital. Not to mention being tied up in the cellar, or being told to stand in the corner with one foot raised. Heavens forbid he was caught with his foot down…
The kids had a horrendous time, with Galen being sexually abusive towards Deborah. Once Lawrence and Bobette got word, they took the kids out of Ethel & Galen’s ‘care’.
The HeLa Factory, 1951-1953
During the 1950s & 60s, there was tremendous progress in medicine. Specifically, between 1951-1953, there was a massive push for the polio vaccine. The biggest epidemic in the history of the virus in the U.S. was unfolding, with 3,145 deaths. But to curb epidemics you need large-scale testing before a vaccine is released to the public. As such, the largest field testing was underway thanks to the HeLa cell line, and safe vaccination tests were given to 2 million children.
Prior to having rejuvenating cell lines in labs, scientists would test on monkeys and mice. Do you have any idea how much 2 million monkeys would cost?
The HeLa cell line was a godsend, as you can infect the HeLa cell line with polio without repercussions. Far cheaper and safer. This is so powerful because scientists can freely test various antidotes on polio-infected HeLa cells. That’s how you come up with a vaccine – by seeing how the HeLa cells respond to various substances. In the end, scientists concluded the final mixture, based on the positive response from HeLa cells, of antigens and antibiotics to create the miracle polio vaccine serum.
Pretty remarkable, right?
With the success in Johns Hopkins, Geroge Gey put his advertising hat on. He flew all over the world; Germany, Chile etc. to present them the idea of cell culture, and would leave the labs with some viles before returning home. The same process for when scientists visited Hopkins, and even sending test tubes in the mail!
Now the Tuskegee Institute, a research university in Alabama, was very interested. They set up a large-scale HeLa production lab to produce 20,000 test-tubes/week. That’s 6 trillion cells every week. This is when the real commercialisation started; with Tuskegee at the heart of the early action and exponentially growing demand for HeLa. They mass-produced the cells and distributed to research facilities globally, which all started from one vile sent from George Gey.
For as little as 50 dollars, researchers could pay to have Tuskegee ship viles of HeLa cells: the start of a multi-billion dollar industry. Cosmetic companies used them instead of animals, a great step forward in ethical behaviour, as well as in steroids, hormones, and even the Cold War. HeLa was exposed to radiation to see the effects of nuclear bombs and centrifuge. The latter for analysing the effects of deep-sea diving on the human body.
Muddying the waters
Where do you draw the line between ethical and immoral? The public started thinking about the women behind the HeLa cells.
Where had they come from, and what was the person’s name?
On November 2nd 1953, there was the first-ever article published by the Minneapolis Star, but the journalists got her name wrong! They referred to her as Helen Lane, and whether this was a deliberate ploy, is not certain from the details in the book, but it kept the Lacks family in the dark. At this time, they didn’t know her mother’s cells founded the HeLa line, it was Helen Lane for all they knew…
In the early days of cell culture between 1954-1966, there were a lot of black and grey hat processes. I find a lot of them to be quite deplorable. Perhaps I didn’t understand completely the intentions of the research, but this is what I get from it…
To me, it borderlines breaking the Nuremberg Code, a written document with 10 ethical principles to protect human test subjects. It was released after World Warr II and the savage testing conducted by Nazi scientists, which would involve live-dissecting of patients to study organ functioning and even sewing on additional limbs.
A lot fo Nazi scientists were hanged for their crimes, yet you wouldn’t see that with the misuse of HeLa cells; quite ironic, right? Don’t get me wrong, the techniques used here aren’t quite as obvious, but equally profound I think. I know that may sound crazy, but let me give you an example…
Chester M. Southam was an immunologist that took full advantage of bending the rules of the Nuremberg Code.
He was injecting live cancer cells into humans without their consent or knowledge. It’s a hidden trick and not as obvious as dismemberment techniques, but dishonourable and wrong all the same.
You see, HeLa has been used in many medical advances, with the initial intentions as a poliovirus vaccine. But early studies on rats showed the development of cancer after injection of HeLa, unintentionally so.
We’re talking about the rapid development of cancer cells.
Southam had the idea of trying to find cancer cures more quickly by injecting HeLa cells into patients already under his care, such as leukaemia patients. 5-10 days later, hard cancerous nodules were forming for Southam to analyse. He later extended his research by injecting HeLa cells into prisoners and even put ads in the papers. It was the 1950’s after all…
The vast majority of prisoners and healthy test subjects fought off cancer quickly and increased their immunity upon subsequent injections. Because of the rapid development of the cancer tissue, Southam would have gained a lot of knowledge and is critical to the foundations for cancer research we have today.
But it’s still a basic violation of human rights, and quite shocking I think. Southam was found guilty of fraud, deceit and unprofessional conduct. It was actually 3 members of his faculty the reported him and subsequently quit. The University of the State of New York banned him from practising for 1 year only.
Ironically, he later became the President of the American Association for Cancer Research. Crazy right!?
The Lacks kids growing up, 1966-1973
Deborah was only 16 and still in high school when she became pregnant with her first child. She stopped going to school once the baby was born.
Sonny was doing very well for himself; an honourable graduate from the airforce and went to work on the railroads.
On the other hand, Jo wasn’t doing too good. He suffered the greatest hardship at the hands of Ethel and the effects were showing. He was discharged from the military because he couldn’t control his rage, spending a lot of time in solitary confinement.
Unfortunately, on September 12th 1970, Joe was threatened in Baltimore by a man named Eldrigle Lee Ivy, a rogue who’d been shooting heroin for years. Ivy had made multiple threats to Joe in the past whilst living in the same neighbourhood. Joe beat him up pretty badly…
Then, on September 15th 1970, Joe was drunk walking home from work, after sharing a bottle of whisky with his colleague, when he saw Eldridge sitting on his porch step. Joe stabs Ivy in the heart, and he dies a few minutes later before an ambulance arrived on the scene.
Joe ran from the crime scene and the Lack’s family put him on a bus from Baltimore to Clover, where he’d be safe in the tobacco fields. Unfortunately, he’d fight with all of his cousins and an already volatile situation was at breaking point. He moved to Washington D.C. where shortly after, he would walk into a police station to turn himself in.
In 1971 he pleaded guilty to 2nd-degree murder, yet the judge only sentenced him to 15 years in prison. It’s partly due to the judge and jury identifying Joe’s mental health issues, antisocial behaviour and troubled past. Although he pleaded guilty, Joe said he didn’t mean to kill Eldridge, yet a neighbour testified against this saying Joe tried to stab Eldridge again in the back when he was stumbling away.
Whilst in prison Joe Lacks converts to Islam and changes his name to Zakariyya Bari Abdul Rahman. It seems that without Henrietta, a strong mother figure, Lawrence and Sonny were doing well, yet Debroah and certainly Joe/Zakariyya, struggled a lot.
Zakariyya would have many tough years ahead. He only served 7 of his 15-years sentence but he was homeless for a long time thereafter. He even slept rough outside or near his father’s house. Day would walk passed his son many times on the street, even asking and pleading for Zakariyya to stay with him. He refused. I found this to be one of the most emotional parts of the book.
I guess he never forgave his father for burying Henrietta in an unmarked grave, and for abandoning the kids with Ethel.
Ironically, Zakariyya would do what it takes to survive. He volunteered in scientific studies for malaria, AIDS etc. in exchange for prescription glasses, food and even shelter. It’s crazy how this entire book revolves around the HeLa research controversy and Zakariyya too would become a test subject in scientific research. The medical community that he so despised, he had no option but to be apart of if he was to survive. One way to look at it is: one was with consent, the other was not…
The Cruel Irony, 1970
George Gey was diagnosed with pancreatic cancer in 1970, aged 71. He dedicated his life to biomedical sciences bringing forth groundbreaking discoveries in cancer research, yet became a victim of the same disease. Doctors performed an emergency procedure but when they opened him up, they confirmed Gey was inoperable.
Geroge decided to he nothing to lose, dedicating is borrowed time travelling around the States meeting with many cancer research scientists. He even donated his tissue multiple times for research purposes. But it was a quick downward spiral. 3 months after his diagnosis and emergency procedure, Gey died on November 8th, 1970.
Gey left behind an impactful legacy, one which cancer research and cell culture’s foundations is built upon. The HeLa cell line that he helped build had gone into outer space in the second satellite ever launched in 1960 by the Russians. We found cigarettes cause lung cancer, develop a polio vaccine, completed gene-mapping, progressed HIV/AIDS treatment and so much more.
The ability for researches to combine cells with any traits they wanted, impossible to do in live humans, all started from one man receiving sliced cervical tissue of an African American women.
Pretty unbelievable. I don’t think Gey himself would even believe it now…
Victor McKusick, 1973-1975
McKusick was a geneticist working at Johns Hopkins who was brought in to fix the HeLa contamination issues initially raised in 1966 by Dr Stanley Gartler, where he identified 18 independently gathered cell lines were contaminated by HeLa. Glucose-6-phosphate dehydrogenase (G6PD) was present in all cell lines, an allele found almost exclusively in people of African descent, which makes sense given the cells originated from Henrietta.
Now, of course, you don’t want HeLa cells in every scientists petri dish! So that’s where McKusick comes in. He was here to solve the contamination issues, and the way he was going to do this was by testing the Lacks family blood.
They needed to be brought in for testing.
He reached out to the Lacks family, stating the purpose of the blood donations was for cancer research only, and to safeguard them from what befell their mother. Deborah thought the consultations was to check to see if she had cancer. And she did quiz McKusick multiple times about her mother, in which he mentioned Henrietta’s cells were being used in nuclear bombs, polio vaccine and sent in outer space.
McKusick gave Deborah a signed copy of his Medical Genetics textbook, thinking this would clear the confusion. I don’t think it helped much! When there are phrases like a “reservoir of morphological, biochemical entities”, you can’t expect Deborah (nor most people) to know what that means. She was also given a phone number to make more appointments for blood donations. Deborah had no clue these donations were to aid in the reduction of contamination of multi-million dollar HeLa cell originating from her mother.
I’m going to briefly fast-forward to 2008 when Rebecca Skloot (the author) met with McKusick shortly before his death. Strangely, he denied any recollection of ever meeting Deborah, nor handing her his book. Strange!?
The Lacks Discovery, 1975
From what I gathered, this was the year the Lacks family discovered that Henrietta was the women behind the immortal cells. That so many people were profiting from HeLa cells while they lived in poverty.
it all started with Michael Rogers, a young reporter from The Rolling Stones who came by the Lacks residence. He was quite the journalistic prodigy and published an amazing piece on Henrietta in 1976. He spoke with Day, and his two sons Lawrence & Sonny. Rogers explained (as best he could – bear in mind, it was the 70s and the Lacks family weren’t college-educated) how anyone can buy glass viles of HeLa cells for $25.00 on average.
That’s when the Lacks realised people were making money off their mother, and they were furious. They felt deceived and left in the dark all this time.
If you search the U.S. patent database, you’ll find over 17,000 HeLa-related cell lines being sent to commercial and governmental labs, ranging from $10.00-$10,000/vile.
What I find ironic is Johns Hopkins, Geroge and Margaret Gey never made a penny, so they’ve always claimed. But I believe them. I think the integrity of the Hopkins foundation in 1873 still rang true in some instances. It was a hospital for the poor and racial minorities at a time when very few similar institutions coexisted.
Geroge was a brilliant scientist but not savvy with money. Sometimes they missed their mortgage payments because George overspent on lab supplies. They bought their house with a $1.00 downpayment, fixed it up and spent the majority of their adult lives paying off the mortgage.
That’s when Deborah made the connection with Helen Lane, and it bothered her immensely. How predominantly white scientists were making tonnes of money selling a poor black ladies cells, one who was born into poverty as a tobacco farmer. At least have the decency to get her name right. Deborah said:
“They’ve been so important for science, least they can do is give her credit for it”.
Profiting unfairly, 1976
More controversy was stirred up following the decades that had passed since the HeLa breakthrough, which were set to continue in the 1970s. It wasn’t just Henrietta and the Lacks family who fell victim to the deceit; here’s another person whose cells were taken without consent for commercial profit…
John Moore was working on the Alaska Oil Pipeline 12 hours/day, 7 days/week when he started to feel too unwell to work. His gums were bleeding and stomach swelled. He visited the doctors and was diagnosed with hairy leukaemia, a rare form of the disease, at only 31 years old. Quite ironic, right? This is the same age Henrietta was when she died!
In fact, their stories are remarkably similar. Johns cells were taken from him without consent and used to develop the cell line Mo, after receiving treatment.
Anyway, this rare form of cancer affected his spleen and was referred to UCLA for specialist treatment. He was seen by Dr David Golde, who performed the surgery to remove the affected spleen. But before surgery, John was told to sign a contract stating that the surgeon could remove and dispose of his spleen. He signed as the vast majority of people would, given his predicament.
Now John lived in Seattle, Washington, so he had to travel down to Los Angeles for the procedure. He initially thought this was a one-off event, but for the next 7 years, Dr Golde would continually invite him down to UCLA for continual checkups.
Yup, you heard that right.
John never had to pay for a ticket, and Golde would take blood, bone marrow and semen for years to come. Golde said they were checkup exams so that Johns cancer wouldn’t reappear. But after countless flights, John started to become suspicious. At first, I’m sure he was flying down month-on-end out of general fear during cancer remissions. And, let’s face it, it’s his doctor’s orders. Who would argue against such an intelligent man like Dr Moore of a prestigious cancer research institution, right?
It may sound crazy, but those 7 years probably flew by.
Then in 1983, the wording of the form changed:
“I do/do not voluntarily grant to the University of California all rights I or my airs may have in any cell line or any other potential product which might be developed from the blood and/or bone marrow obtained from me”.
For the first time in 7 years, John said no and circled the ‘do not‘ box, then flew back to Washington after yet another sample. Only this time, Golde called John multiple times asking why he circled no? That’s when his suspicions were confirmed. He even got a letter in Washington saying:
“Stop being a pain and sign the form”.
So John compiled all the information from previous doctors notes, letters etc. to give to his lawyer to build a case. it didn’t take long for his lawyer to see that John’s cells were already in use as the Mo cell line, which Dr Moore had filed for a patent for. $3.5 million worth of investment biotech companies had already been made!
Like Henrietta, John’s cells produced rare proteins that drug companies would pay top dollar. Moore attempted to sue Dr Golde and UCLA in 1984 and secure property rights for his tissue, where he became the first human ever to try to legally stake a claim in his/her tissue.
However, Moore lost his case. The courts sided with Golde stating a patient cannot legally claim the tissue that was taken from them by a doctor through blood and tissue samples when the patient is not expecting to keep the material. They really have no use for it. But the doctors and science do.
I’m sure there are plenty of other cases like Henrietta and John Moore’s. Where tissue is taken without informed consent or clarity as to what it would be used for. The Lack’s family and Moore haven’t won any appeals or cases to a share of the profits. To be honest, there’s no point in them trying. They would never win, as the tissue is removed from their bodies; they have no use for at and technically is no longer rightfully theirs.
Learning what killed Henrietta, 1984-1995
A Russian virologist Harald zur Hausen discovered HPV in 1984. He conducted plenty of research on cervical cancer, which is what killed Henrietta, and confirmed that HPV can cause cancer of the cervix. Specifically, HPV-16 and HPV-18 caused cancer, and the HeLa cells in his lab tested positive for this. But to be certain, Harald requested Henrietta’s biopsy from Johns Hopkins…
He confirmed that Henrietta had multiple strains of HPV, including HPV-16 and HPV-18.
FYI, >90% of sexually active adults have a strain of HPV, of which there are >100 strains, and in most cases it’s harmless. If you are unfortunate enough to have either HPV-16 or HPV-18, and it goes undetected for many months or years, it can fester into cervical cancer. And this is what happened to Henrietta.
Now, we can make assumptions that due to Day’s unfaithfulness, Henrietta got the STDs from him, but we’ll never know for sure. There’s a valid argument to be made though. Day slept around and back in the 1940s and ’50s, methods of detection would have been very limited.
Nevertheless, it was a breakthrough in medicine when Harald zur Hausen discovered this. Harald figured if you can block the development of HPV-16 and HPV-18, you can block the development of specific proteins that ultimately lead to cancer. HPV vaccines were produced based on Harald’s early discovery, which leads to his Nobel Prize in 2008.
In comes Rebecca Skloot, 1999
So much has happened already. The Lacks family hold a lot of resentment towards biotech labs, Johns Hopkins and the HeLa cell line. Rebecca, a young science author and reporter decided to take on this massive task of writing about Henrietta Lacks and her family. It was not plain sailing. She faced a lot of adversity and resistance when trying to get the details for this book.
These breakthroughs in science come at great cost, as stated eloquently by Adam Curtis, a doctor at Johns Hopkins:
“It was the best of times, it was the worst of times. But it was the best of times for science. In that, this very peculiar tumour gave rise to the HeLa cell line. For Mrs Lacks and the family she left behind, it was the worst of times”.
But first Rebecca had to get in contact with the Lacks family before anything can happen! And this proved very difficult. She had to find a way in, and her original link was Roland Patillo. He was an African American student under Geroge Gey, and now Professor, who was very familiar with the Lacks family. He understood their pain and was very protective of them. So you can imagine his hesitancy when Rebecca walks up.
Patillo only gave Rebecca a couple of Lacks contact details after he was sure of her good intentions. Patillo said Rebecca MUST show compassion and patience with Deborah, who was now in her 50s and partially deaf. So Rebecca had Deborahs phone number, now the real work begins…
Rebecca & Deborah’s first call
This took place in 1999, and after taking the guidance of Patillo on board, not mentioning HeLa, Rebecca tried, and tried, and tried. But Deborah refused to meet. I think a lifetime of hardship and dishonesty made her very reluctant to open up, especially to strangers on the phone!
It was clear Deborah wanted to know EVERYTHING about her mother but wasn’t sure if Rebecca was the right person to partner with. They had a few back-and-forth calls but nothing materialised. It wasn’t until 1 year later when Deborah called Rebecca saying she was prepared to meet. She made Rebecca promise 3 things:
- To make sure her book mentions Henrietta Lacks – none of the incorrect names from previous articles and documentaries
- State that Henrietta had 5 children – Sonny, Lawrence, Deborah, Zakariyya (formerly Joe) & Elsie
- Find out exactly what happened to her mother and Elsie
Deborah said to Rebecca over the phone before hanging up:
“Get ready girl. You got no idea what you gettin’ yourself into”.
The first encounter, 2000
Deborah and Rebecca met face-to-face for the first time on July 9th, 2000 in a Bed & Breakfast, at which point Deborah was 50. She moved gingerly with a cane, stood 5 ft. tall and 200 lbs. A substantial woman to say the least.
She was very cautious around Rebecca at first, and who can blame her. She’d had a rough time of it but expressed a strong desire to learn more about her mother and to do some good. Deborah wanted to talk to cancer patients, researcher and scientists who used her mothers cells for good. To see the cells under a microscope for the first time. Unlike perhaps her brother Zakarriya, who out of ignorance resented the whole thing, Deborah was proud of the HeLa cell line.
She loved that her mother’s cells were advancing medicine. She just wanted to clear the air around her mother and find out what happened to Elsie. Very, very little was know of Henrietta Lacks at the time. Ironically, Deborah said:
“The world’s got more pictures of my mothers cells than they do of her”.
It’s true. The 2 images below are the only well-known images of Henrietta that exist on the internet. Isn’t it crazy to think of the countless hour’s scientists have stared down a microscope to look at Henrietta’s cells, yet very few pictures of her exist?
And Rebecca was going to help Deborah and the Lacks family, in ways they never thought possible.
There was going to be many struggles along the way. Although Deborah and Rebecca built a beautiful relationship as the book progressed, there was going to be many stories and revelations Deborah would find difficult to cope with. She’d have multiple panic attacks, break out in hives, check herself into the hospital to discover her blood pressure was so high, her doctor was amazed she hadn’t had a stoke!
Not to mention, although Debroah is a strong-willed woman, and as a reader/listener, you can’t help but admire her, she wasn’t exactly a scientist. Rebecca spent a lot of time, as a science writer, explaining things to Deborah in layman’s terms. Deborah thought at one point after hearing about the cloning of the first-ever sheep in the UK, that there were clones of her mother walking around London! Rebecca definitely has the patience of a saint…
The lines between sci-fi and science were a little blurred for her. Although she was correct when she said her mother’s cells had been cloned so many times that they could wrap around the Earth 3-times over, weighing over 50 million metric tonnes. Bear in mind we’re talking about individual cells here – incomprehensibly small. I find it quite ironic that Henrietta, a woman standing no more than 5 ft. tall in real life, spawned these limitless cells.
Anyway, little did I know by this point in the book that Rebecca & Deborah would develop an inextricable bond and friendship spanning a decade.
Rebecca meets Zakariyya, 2000
Just like Deborah, Zakariyya wasn’t exactly tiny…
Standing 5′-8″ weighing 400 lbs, he was colossal and walked with a cane. But like Deborah, he had an incredibly smooth and youthful complexion for a man about to turn 50. Deborah did warn Rebecca that Zakariyya had a personal vendetta with Johns Hopkins and Geroge Gey. Considering this was the main purpose of the visit, Rebecca was understandably nervous.
The pair arrived at Zakariyya’s assisted living facility, which Deborah helped him get into because he qualified as legally blind and deaf. Deborah waited outside of Zakariyya’s room whilst Rebecca conducted the ‘interview’.
I understand Zakariyya’s frustrations, although he didn’t make the process easy for Rebecca. He made a very good point about the violation of privacy with the analogy of him walking in on Rebecca when she’s having a shower. He thought the whole thing of taking her mother’s cells was uncomfortable – nobody cared to ask for access to the Lack’s family gene pool. All whilst countless people were profiting.
“People don’t know, we just poor as poor”.
He had a particularly strong view on Geroge Gey:
“I’d take a black pitchfork and stick it up his ass”.
George Gey and his wife didn’t profit at all but Zakariyya thought they did nonetheless. And regardless, I think by this point we all know there is more to the hatred in Zakariyya’s heart the Gey. I strongly believe the 2 key people responsible are Ethel and his father, Day. Zakariyya, on the other hand, states:
“I think them cells is why I’m so mean”.
Meeting HeLa, 2001
On May 11th 2001, Rebecca, Zakariyya and Deborah went to visit Christoph Langauer, an Austrian professor at Johns Hopkins. Langauer is a breath of fresh air. Unlike most scientists, he truly wanted to help the Lacks family to understand their mother’s contributions to science. He was more than happy to invite them to Hopkins for a tour.
If there ever was reason to believe the trust between doctors and the African American community in Baltimore was broken, Langauer is the shining light. He explained basic cell biology to Deborah and Zakariyya, allowed them to look under the microscopes and hold a vile of their mother’s cells for the first time. Another quite emotional part of the book.
What happened to Elsie, 2001
I guess you could say Rebecca has fulfilled half her promise to Deborah. To this point, she’s allowed Deborah to travel to labs and Johns Hopkins to better understand her mother’s cells.
Now’s the time to focus on Elsie…
I warn you, these revelations are quite shocking and emotional. Read on with care…
Deborah and Rebecca went to Crownsville to see if they could find Elsie’s medical records. Even in 2001, the place was strange and had an eerie vibe. After all, the centre was formerly coined ‘The Hospital for the Negro Insane’. What’s more insane is the name given to the institution…
But Deborah was prepared for the worst. She’d tried in the past to get ahold of her sister’s medical records but was told they’d been destroyed:
“I know it wasn’t good. Why else would they get rid of them?”
The hospital is near enough empty until they bump into an elderly man, Paul Lurz, who had been working at Crownsville since 1964. Deborah explained to Lurz about her history and sister; although he sympathised with Deborah, given the time of her death, the chances of their being medical records from the 1950s was slim to none. Nevertheless, he had a look in the records room with shelves packed to the brim…
And to his amazement, he found Elsie Lacks!
They found photos, autopsy and medical records.
Before handing the file to Debrah, Lurz said to Deroah to mentally prepare:
“Learning can be as painful as not knowing”.
It’s unbelievable they found a picture of Elsie, which Lurz said was a 1 in a million chance. But the picture spoke a 1,000 words. Highlighting the tormenting conditions Elsie was experiencing. It was quite hard to read…
Her skin was chapped, tongue thick and protruding from her mouth, bulging eyes. There was a hand wrapped around her neck to hold her head in position, which was from a woman standing in the background. It looked so unnatural and forced; Deborah couldn’t understand why the “careworker” was forcing her head like this.
They flicked through the autopsy report and found that Elsie was also inducing forced vomiting resembling a “coffee-ground material” before her death.
Even through all of this, Deborah still said, tearfully:
“She looked just like my daughter”
Deborah already had-to-hand Elsie’s death certificate, which she read out loud:
“Elsie Lacks, cause of death: A – respiratory failure, B: epilepsy, C: cerebral palsy”
She had none of the characteristic physical signs of cerebral palsy, which would mainly be weak muscles causing slouched posture. Lurz was confident they could rule that one out. But she was epileptic, and like many other epileptic patients, Elsie was subject to pneumoencephalography.
The procedure was invented in 1919 but banned in the 1970s, and Lurz was quite confident Elsie was getting this procedure. It involves drilling holes in the brain under anaesthesia, which allows you to drain some fluid from the brain. Otherwise, the fluid would cloud the Xray and you wouldn’t get a clear picture. To no surprise, this came with horrendous side effects, manifesting in Elsie’s picture in the Crownsville records.
The institution seemed like a vile place but was perhaps ‘standard’ for the times. I’m not sure on that though. Maybe because Crownsville was specifically for African Americans, the treatment was incredibly poor, to say the least. Plus, it was overcrowded. In 1955, Crownsville had 2,700 patients, which is 800 above max capacity.
Another poignant connotation is Elsie’s pneumoencephalography being conducted with no consent. Crazy isn’t it?
There you have it. In my opinion, the most emotional and powerful part of the book. Although a painful revelation, Deborah was preparing for this moment for years. She felt at ease making this trip and felt a true connection with her sister like never before. Deborah felt Elsie could rest in peace now 🙂
Promises kept, and lifelong friendships, 2001
By now Rebecca had tonnes of content for her book, she’d met pretty much every member of the Lack’s family and she had a friend for life in Deborah. Their friendship grew immeasurably throughout the book, which was nice to see considering how defensive Deborah was in the beginning. But with the amount these two went through, it comes as no surprise 🙂
Most importantly, Deborah got closure. She travelled to cancer research conferences to speak about her mother; she met cancer patients who were grateful for her mother’s cells, along with doctors and scientists.
Deborah’s death, 2009
Many years passed and ‘normality’ resumed for Deborah and the Lack’s family. Rebecca has spent years writing this book and it was nearly finished. Deborah never got to read the book, although Rebecca did offer up multiple drafts.
In the forthcoming years, Deborah and Rebecca would remain in continual contact but mainly by phonecall rather than in-person. Some time had passed since they last spoke and Rebecca tried calling Deborah in May 2009 about all of the changes she saw happening in Clover, as it has been years since she last visited.
She got no answer from Deborah and her mailbox was full, so she called Sonny. He’d been trying to call Rebecca and said this to her on the phone. That’s when Rebecca’s heart sank, eyes’ filled with tears, as she knew after all these years, Sonny would have only one reason to call her…
Deborah died of a heart attack shortly after Mothers Day, 2009.
Her health had been poor for many years, decades even. She did suffer a stroke back in 2001 whilst at church. She was on a concoction of medicines for a long time and knew she wasn’t going to live to a ripe old age. She’d said previously:
“I don’t know how I’m going to go. I just hope it’s nice and calm”.
And the good news is, it was. Sonny would check on Deborah every day. And one day he found her lying in her bed, arms crossed, smiling. Sonny said:
“She’s with them now, there’s no place in the world she’d rather be”.
Deborah never cared about those profiting from the HeLa cell line. She figured she’d be contradicting herself if she did, or perhaps living a lie. It’s ironic because Deborah was on a plethora of medicines herself.
At the end of the day, her medicines kept her alive until she was nearly 60, which isn’t old by any means for nowadays, but lived double as long as her mother. Deborah took 15 pills/day, which was $150/month. And we’re talking about a lady living in or around the poverty line in America 15-20+ years ago. She started taking the majority of her pills in 1997, including sleeping, diabetes, acid reflux etc. That’s a significant chunk of her income. She once said:
“I’m a walking drug store. I can’t say nothing bad about science”
She simply wanted some justice and recognition for her mother and Elsie. She felt they could rest in peace after her adventure with Rebecca was over. Even when countless people told her she could sue, she never did.
Takeaways from the book
The number 1 question I had by the end of this amazing book was, is it illegal to take your cells and use them in research without your knowledge? The answer is NO in a lot of cases but the ethical line is blurred. I’ll give you a perfect example, if you donate bone marrow or blood regularly, a lot of the time you’re acting as a donor. Sometimes, hospitals will use your blood for research purposes, to test new drugs, vaccines etc.
How do you think that’s going to hold up in a court of law if you’re begrudged about the blood donation that you signed up for being used in a revolutionary cancer research drug? Not well! A feeling of ownership over you excrement, blood and platelets doesn’t build a strong case in court. I for one would be immensely happy for the discovery – think of the countless lives that can be saved 🙂
There certainly wasn’t the same ethical guidelines in 1951, so any court case that the Lacks family submit (although the never have and seems like they never will) would likely be rejected. You have to make decisions based on the governing laws at the time. There weren’t moral obligations for doctors back then.
Heck, most American’s have their DNA and tissue on file, with labs and hospitals keeping the data indefinitely. 307 MILLION tissue cells are stored in the USA alone and increasing by the millions each year, such as from routine medical procedures and research donations. It’s been happening since the late 60s. Moreover, it’s common practice to take blood samples from newborns and store their DNA on file.
It would be nye-impossible to trace your cells to a specific cause or medicine anyway. The researchers aren’t going to know the donor, there is no human interaction, so how will you identify individuals with trillions of cells in circulation? Seems like a herculean effort for something that most people would not consider an invasion of privacy. Your cells may very well be stored with the NIH (National Institute of Health), hospitals, cancer research and biotech labs across the globe.
What are you going to do about it?
In my personal opinion: nothing.
Feel proud knowing your cells are helping countless individuals less fortunate than ourselves!
With that being said, a line needs to be drawn somewhere, and doctors and scientists will need to gain consent if the human tissue is strictly being used for research purposes. And YOU also know what you’re signing up for.
There you have it, folks. This is how one ladies cells revolutionized medicine. I hope I’ve done Rebecca Skloot justice; it’s my summary and analysis. Although I’ve done my best to synthesize the key points of the book, I couldn’t recommend you read the book enough! It’s phenomenal and 10-years in the making!
Check it out here on Amazon, and if you have any questions on the Lacks family or HeLa, just leave them in the comments 🙂
Like The Immortal Life of Henrietta Lacks Summary, I do like to give accounts of other books, such as: