 What’s in it for me? Learn about the woman behind the world’s first immortal cells.

 Henrietta Lacks was a poor black American woman who died of an extremely
aggressive form of cancer.
 Although Henrietta Lacks succumbed to her illness, her cells – named “HeLa” –
survived and thrived.
 To help combat diseases like polio and cancer, scientists created a factory for
producing HeLa cells.
 Although her cells spread across the globe, Henrietta and her family were largely
forgotten.
 After Henrietta’s death, her family struggled to survive.
 Black Americans have a long history of being wary of the medical profession.
 Although HeLa cells helped many scientific discoveries, their prevalence threatened
much research.
 The search to learn more about HeLa brought scientists to the Lacks family.
 The HeLa case is not the only one that involved concerns about privacy in cell
donation.
 To whom do my cells belong: The right to cells vs. the right to medical research.
 Final summary

What’s in it for me? Learn about the woman

behind the world’s first immortal cells.
Until recently, the life of Henrietta Lacks, the donor of the world-famous HeLa (pronounced
hee-lah) cancer cells, has been a mystery.

Even though her cells have been essential to some of the most incredible advances in
medicine of the past half-century – treatments for polio, and seminal research on AIDS and
cancer cures – most people don’t know her name. Those who are aware that there’s a person
behind the cells often get her name wrong, referring to her as Helen Lacks or Helen Lane.

This book tells the parallel stories of Henrietta Lacks and her cells. In addition to recounting
Henrietta’s battle against cancer, to which she ultimately succumbed, author Rebecca Skloot
details the history of the cells which outlived her, along with the rise and establishment of the
cell-culture and gene-patenting industry.

As these blinks will show, The Immortal Life of Henrietta Lacks is a must-read for anyone
with an interest in medical history, black American history, and the future of cell research
and gene patenting.
In these blinks, you’ll discover

 why cell strands are so important to medical research, and how financially valuable
they can be;
 why your cells are kept in storage for years after you’ve visited the doctor for a
routine checkup;
 why plantation owners would spread stories among their slaves about doctors who’d
come to abduct them in the middle of the night; and
 what’s behind the historical tension between black Americans and the medical
industry.

Henrietta Lacks was a poor black American

woman who died of an extremely aggressive
form of cancer.
On August 1, 1920, in Roanoke, Virginia, a small girl who would change medical science
forever was born. Her name was Henrietta.

Like most of her family, young Henrietta helped out on their tobacco farm, harvesting the
crop and hauling the leaves to South Boston to be sold.

When she wasn’t working, young Henrietta played with her cousin, David Lacks –
nicknamed Day.

Henrietta married Day when she was 20 and the couple soon began having children. But
these were difficult times for small farmers, and the family were struggling financially. So
Henrietta and Day decided to move to Sparrows Point, near Baltimore.

A decade later, in early 1951, Henrietta walked into the designated coloreds-only
examination room of Johns Hopkins gynecology center. She’d discovered a lump on her
cervix.

After doctors took a sample and rushed it to the pathology lab for diagnosis, they sent
Henrietta home. There, she quickly returned to her usual daily routine: looking after her
children, cooking for her family and keeping the house in order.

For a while at least, life continued as normal.

Then her biopsy results arrived: Henrietta had epidermoid carcinoma of the cervix, stage I.
At the time, Johns Hopkins were using radium – a radioactive material – to treat cervical
cancer. But while radium is extremely effective at killing cancer cells, this comes at a cost: it
also destroys any other cells it comes into contact with. Indeed, radium is so powerful that, in
high doses, it can even burn the patient’s skin.

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.

There, Henrietta endured hours upon hours of excruciating radium exposure – the first of
many treatments she’d receive over the course of the year.

Even though these treatments were intensive, to the extent that much of her body was visibly
burned, they were ultimately ineffective.

Henrietta Lacks died on October 4, 1951.

Although Henrietta Lacks succumbed to her

illness, her cells – named “HeLa” – survived
and thrived.
In the early 1950s, scientists and doctors were searching for ways to keep human cells alive
outside the body so that they could conduct experimental research that would contribute to
curing such illnesses as cancer, polio, herpes and influenza.

However, they struggled to keep the cells alive. When extracted from the body and placed in
a culture medium (a liquid which helps cells survive), most of the cells would quickly die.

A new technique was needed.

As luck would have it, Johns Hopkins’ head of tissue culture research, George Gey, was also
an inventor and visionary. In his tireless search for a way to keep cell cultures alive outside
the body, Gey had come up with what would be his most important invention: the roller-tube
culturing technique.

This involved a cylinder, punched with holes to accommodate special test tubes (known as
“roller tubes”), rotating very slowly, 24 hours a day.

Gey’s reasoning was that, for cells to survive, constant rotation was necessary, as it mimicked
the motion caused by the flow of blood and other fluids around the human body.
Although the logic of Gey’s technique was indisputable, his assistant, Mary Kubicek, was
skeptical that Henrietta’s isolated cancer cells – labelled “HeLa,” after the first two letters of
her first and last name – would survive.

However, Kubicek, along with other researchers, was shocked when, two days later, she
observed that the cells were not only still alive, but actually thriving. They were dividing at
an unprecedented rate: Kubicek noted that the cultures were doubling every 24 hours – faster
than the cells in Henrietta’s body!

Why did the HeLa cells survive? Gey’s technique certainly played a major role, but it was
also the cells’ aggressive nature – measured by how quickly they metastasized in Henrietta’s
body – that enabled them to live and thrive.

Kubicek continued the testing, distributing the cells over multiple test tubes. Meanwhile, Gey
proudly announced to colleagues that he’d grown “the first immortal human cells,” and soon
began sharing them with labs that wanted to use them in research on illnesses like polio and
cancer.

To help combat diseases like polio and cancer,

scientists created a factory for producing HeLa
cells.
Soon after Henrietta’s death in 1951, preparations were underway for the creation of a “HeLa
factory,” a project to mass-produce HeLa cells on a weekly basis. The project had one
overarching goal: to find a cure for polio.

But why were the HeLa cells so amenable to mass production? There were several reasons.

First, the cost of producing the cells and performing research on them was relatively low.

At the time, most studies aiming to find cures for diseases used monkeys as test subjects. But
experimenting on monkeys was problematic – and not because testing on animals was
considered unethical. Rather, the problem was that experimenting on monkeys was
expensive, making it difficult for labs across the country to conduct large-scale experiments
and research.

Second, the HeLa cells were able to survive in a culture medium. In contrast, other cells
could grow only on a glass surface and would stop growing when they ran out of space. So as
long as there was a culture medium, HeLa cells would continue to grow.
Third, having tested various modes of transportation, George Gey discovered that HeLa cells
were particularly resilient to being transported across the country. For one thing, they
reproduced at a much faster rate than other cells, which increased the odds of their survival
during shipping.

The final reason for the success of HeLa cells was that they were highly susceptible to the
polio virus.

These reasons led the National Foundation for Infantile Paralysis (NFIP) to set up the HeLa
Distribution Center to facilitate the growth and distribution of these cells for research labs.

Ultimately, because the mass-produced HeLa cells were quickly exposed to many different
conditions, they were soon used to explore not just polio, but many other illnesses too. And
soon, what began with Gey isolating and mailing a cell culture to other labs quickly evolved
into a lucrative institution.

Although her cells spread across the globe,

Henrietta and her family were largely
forgotten.
The HeLa cells spread around the world, from lab to lab, at a fantastic rate. Yet as the cells’
fame and importance grew, their source was quickly forgotten.

In 1999, the author stumbled across a number of articles that were presented at a conference
on the HeLa cells at Morehouse Medical School in Atlanta – one of the oldest historically
black universities in the United States.

She contacted the conference organizer, Roland Pattillo, who also happened to be the only
black student of George Gey.

Pattillo explained that the Lacks family was reluctant to discuss Henrietta or her surviving
cells with anyone, journalist or otherwise.

Why the reluctance?

The family believed that the doctors had extracted the cells from Henrietta without asking her
permission or telling her their plans for the cells.
Additionally, the family had a general mistrust of the medical industry due to the history of
exploitation of black Americans in medical studies – such as the notorious Tuskegee syphilis
experiments. In the 1930s, scientists began studying the development of syphilis from the
time of infection to death. To that end, the researchers recruited hundreds of uneducated, poor
black men, many of whom did not realize they had syphilis, and let the disease progress
unchecked as they observed its symptoms – even though they could have cured the men with
penicillin.

After grilling the author to make sure her intentions wouldn’t upset Henrietta’s family,
Pattillo handed her their contact details.

Immediately, the author called Henrietta’s husband and children to arrange a meeting.
Unfortunately, no one showed. She’d been stood up.

So the author decided to travel to Clover, Virginia to get a feel for Henrietta’s hometown, and
to locate distant relatives of the Lacks family. Her reasoning was that, if she could meet with
Henrietta’s cousins, she would increase her chances of meeting her immediate family one
day.

After Henrietta’s death, her family struggled to

survive.
Following the death of Henrietta, her family struggled financially. To make ends meet,
Henrietta’s widower, Day, began working two jobs. Meanwhile, her oldest son, Lawrence,
left school to look after his two brothers, Sonny and Joe, and his sister, Deborah.

In the midst of these difficult times, there was also the burning question among the children
of what had happened to their mother. Even though they were keen to know the answer, the
children didn’t press their father; he’d already told them explicitly not to ask any questions
that might rock the boat, and to accept that their mother had simply gone away.

Years later, Henrietta’s daughter, Deborah – then in high school – would confront her father
and demand that he reveal her mother’s identity and explain what had happened to her.

But all her father would say was, “Her name was Henrietta Lacks and she died when you was
too young to remember.”

In her own search for answers decades later, the author traveled to Baltimore and Clover,
Virginia to talk with Henrietta’s distant relatives. She also contacted the doctors involved in
Henrietta’s case.
Just as the author had hoped, this brought her closer to Henrietta’s immediate family.
Although they were initially reluctant to discuss Henrietta, they later opened up and stayed in
touch throughout the writing of the 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?

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 documented cases of the exploitation of black people by
scientists, many of the stories circulating among black Americans were fictional. Since the
1800s, one of the tales shared via black oral history was a particularly sinister one: the case of
the “night doctors” that kidnap black people to experiment on them.

As this story had it, doctors from Johns Hopkins would set out in the middle of the night and
abduct black people living near the hospital for purposes of research.

In fact, one reason such stories took hold was that white slave owners would use them to
scare their slaves, dissuading them from trying to escape. Indeed, they would even dress up in
white sheets, posing as spirits who’d infect the slaves, or as doctors who’d kidnap them.
Those white sheets would later become infamous as the source of the Ku Klux Klan’s hooded
cloaks. Although the “night doctors” story was fictional, medical experiments had in fact
been conducted on slaves to test new surgical techniques.

In the 1900s, with hospitals and research centers offering money for bodies on which to
conduct their research, black people’s distrust of the medical field intensified. And the fact
that Johns Hopkins was located near a poor black area certainly contributed to local black
people’s suspicion of the school.
Yet, the myth of the “night doctors” actually obscured the raison d'être of Johns Hopkins: to
provide medical care for those who couldn’t afford it.

It was this historical tension between black people and the medical industry that drove
Henrietta’s family’s suspicion of doctors, researchers and anyone else interested in Henrietta
and her cells.

Although HeLa cells helped many scientific

discoveries, their prevalence threatened much
research.
After distributing HeLa cells to research centers and hospitals all over the world, scientists
continued research on HeLa and other cell cultures in the hope that cures for various diseases
would shortly follow.

But in 1966, a major problem with the research was revealed.

Geneticist Stanley Gartler had been conducting research with the aim of finding new genetic
markers – DNA sequences that reveal the identity of species or individuals.

At a 1966 conference on cell culture, Gartler revealed that, in the process of looking for new
markers, he’d discovered that the most commonly used cultures in cell research all had one
marker in common. In other words, the HeLa cells had contaminated all the cultures they’d
been near.

Although scientists knew that cell cultures could contaminate one another, they did not know
exactly what HeLa was capable of, or its effect on other cell cultures.

Not only could Henrietta’s cells survive in the air attached to dust particles, but they could
also pass from unwashed hands and pipettes to other cultures. And they were strong enough
that, once passed on to another culture, they would quickly reproduce and contaminate it.

Gartler’s revelation undermined the vast amount of research that had been conducted on what
scientists had assumed to be different cell cultures. If all cell cultures had traces of HeLa,
then they all shared the same genetic characteristics and were therefore not as different as
originally thought. In effect, the research had been a waste of money.

While the majority of doctors continued working on the cultures, a few took Gartler seriously
and believed that his findings were correct. Those doctors needed to find a way to identify the
presence of HeLa, a need that led them to Henrietta’s family.
The search to learn more about HeLa brought
scientists to the Lacks family.
The widespread contamination of HeLa cells led doctors to try to locate Henrietta’s surviving
family. Luckily, the family were patients at Johns Hopkins, so there was little difficulty in
obtaining their contact information.

The doctors hoped that by taking samples from the family, they would be able to continue
research on the contamination, and develop a way to map the human genome.

It was at Yale University in 1973, at the First International Workshop on Human Genome
Mapping, that doctors and researchers determined that locating the HeLa contaminant
required first locating Henrietta’s surviving children.

One of the scientists who had published a paper on HeLa, Victor McKusick, asked his
postdoctoral fellow Susan Hsu to find the Lacks family and request blood samples from
them.

Hsu contacted Day Lacks and asked him to get his children, Lawrence, Sonny and Deborah
together to contribute samples. Hsu also sent a nurse to collect samples from Joe – now
named Zakariyya – who was in prison.

While Hsu claims that she told Day the blood work was for research purposes, Day told his
children that it was in order to find out whether the children had cancer. Which of them was
telling the truth is unclear.

Around this time, Deborah began to worry about getting cancer, like her mother. The arrival
of doctors only exacerbated her concern. Since Deborah was nearing the age her mother was
when she had cancer, Deborah wanted to have more information about her mother.

She demanded her father give her as much information as he could about Henrietta, her life
and her condition. When she didn’t get all the answers she was looking for, she went to the
doctors at Johns Hopkins, who took the opportunity to request additional blood samples for
their study.

And that’s how the doctors and the Lacks family came together to discuss Henrietta.
The HeLa case is not the only one that
involved concerns about privacy in cell
donation.
The case of Henrietta and the HeLa cells is certainly exceptional, since Henrietta was
unfortunate enough to have a very aggressive form of cancer that nonetheless aided research
and development to cure other diseases.

But it’s also unexceptional, in that what happened to Henrietta could have happened to others
– and in fact did, in at least two similar cases.

The first case involves the Alaskan pipeline worker, John Moore.

In 1976, Moore felt like he was going to die: his belly was swollen and his body was covered
with bruises. At 31 years of age, Moore was told that he had a rare and deadly form of
cancer: hairy-cell leukemia.

Cancer researcher David Golde at UCLA treated Moore, removing his bulging spleen, which
weighed 22 lbs – 11 times more than a regular, healthy spleen.

While Moore continued his treatment, Golde developed and marketed Moore’s cells – which
he named “Mo” – without informing him.

Once Moore discovered what had been going on, he sued Golde for both breach of privacy
and profiting from his own cells without obtaining consent or even informing him.

Ultimately, Golde won the court case and was able to continue marketing the “Mo” cells.

Another case from around the same period involved Ted Slavin. Slavin was born a
hemophiliac. As a result, his body had already been producing antibodies for hepatitis B.
These antibodies were extremely valuable, both financially and medically.

However, the difference between Slavin and Moore was that Slavin’s doctor informed him
that he could market his cell line and make a lot of money. So Slavin did just that, while also
teaming up with the Nobel prize-winning virologist, Baruch Blumberg, to help cure hepatitis
B.
What distinguished both Moore and Slavin from Henrietta was the fact that they were both
able to contest the use of their cells. As Henrietta had passed away, she could no longer even
claim property rights for her cells.

As you’ll see in the next and final blink, the HeLa case has many repercussions for the future,
especially when it comes to patients’ rights.

To whom do my cells belong: The right to

cells vs. the right to medical research.
At this point, you might reasonably wonder whether the actions of doctors in cases such as
Henrietta’s – that is, isolating and marketing a patient’s cells without their consent – were
illegal or not.

In fact, from Henrietta’s day to the time the author was writing (2009), such practices were
not illegal.

Why?

The issue revolves around consent and money.

In the United States, there is a growing database of tissue samples. A 1999 report stated that,
based on a conservative estimate, there are more than 300 million tissue samples stored in the
United States, taken from more than 170 million people. And in 2009, the National Institute
of Health (NIH) invested $13.5 million to establish a database for samples taken from
newborns.

Today, if doctors want to take samples for research, they require the consent of the patient.
However, they do not require consent if they wish to store samples from diagnostic
procedures (e.g., the removal of moles for biopsies) for future research.

Supporters of these practices argue that current legislation is sufficient, and that there are
enough institutions and committees investigating the issue.

But those who oppose the status quo argue that the patient has a fundamental right to know
the purposes for which their cells will be used – in case, for example, they involve ethical
issues, such as nuclear weapon testing, abortion, intelligence studies, experiments to find
racial differences, and so on.
As for the marketing and commercialization of cells, this will surely continue. But the issue
of whether doctors will be required to inform their patients of the potential financial gains is
uncertain.

Currently, the greatest worry in this arena is gene patenting, as it concerns the right of
ownership and distribution of biological materials.

In 1999, President Clinton’s National Bioethics Advisory Commission issued a report stating
that federal oversight of tissue research was lacking. And, though they advised that patients
should be granted more rights regarding what their cells were used for, they remained quiet
about the financial issue and who should profit.

Final summary
The key message in this book:

The cells of Henrietta Lacks– named HeLa – became fundamental to research into a
cure for polio and other diseases. While in treatment, Henrietta was not informed, and
so she died not knowing the incredible role her cells played in medical science.

Suggestedfurtherreading: The Violinist’s Thumb by Sam Kean

The Violinist’s Thumb is an exploration into DNA, the double-helix of life itself. The
following blinks chronicle the scientific discoveries that led us to understand DNA and the
major role it’s played in the emergence of life on earth.