The Immortal Life of Henrietta Lacks by Rebecca Skloot A Case Study Report In Partial Fulfillment of the Requirements In Bio 228: Virology Presented to Prof. Rey Tantiado Biological Science Instructor Submitted by Louregine Navarra BS Biology (Premed)
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Case Study Report on The Immortal Life of Henrietta Lacks by Rebecca Skloot
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The Immortal Life of Henrietta Lacks by Rebecca Skloot
A Case Study Report
In Partial Fulfillment of the Requirements
In
Bio 228: Virology
Presented to
Prof. Rey Tantiado
Biological Science Instructor
Submitted by
Louregine Navarra
BS Biology (Premed)
January 2015
Background of the Story:
Rebecca first became interested in Henrietta’s story when a
biology instructor told the story of how this unknown woman’s
cells were used to create the first immortal line of cells used
for medical research. Her growing interest in Henrietta resulted
in the decision to write a book. The next ten years or Rebecca’s
life were spent working with the Lacks family to uncover the true
identity of Henrietta Lacks — a task that led her to re-examine
her understanding of race, faith, science, and ethics.
It all started when Henrietta Lacks went to the Johns
Hopkins University hospital to examine a “knot on her womb” that
had given her pain for the last year. Dr. Howard Jones took a
sample of a shiny, nickel-sized purple lump on Henrietta’s cervix
and sent it to the lab for testing. He noted that there had been
no abnormalities observed four months earlier when she had
delivered a baby, nor when she had come in for a follow-up six
weeks later.
Henrietta Lacks was born as Loretta Pleasant on August 1,
1920 in Roanoke, Virginia. Her mother died in childbirth four
years later and Henrietta’s father moved the family to Clover,
Virginia where she lived with her grandfather. Growing up in the
same house was David “Day” Lacks, Henrietta’s cousin, with whom
she ended up falling in love. They had their first child together
when Henrietta was 14 years old and their second when she was 18,
though they did not marry until 1941. The couple moved to Turners
Station just outside of Baltimore, Maryland when World War II
broke out so that Day could work at the Sparrows Point steel
mill.
Dr. Richard TeLinde was one of the leading researchers of
cervical cancer in the 1950s, and he had been working with Dr.
George Gey to grow cancerous cervical tissues in a lab for quite
awhile. When Henrietta went to Johns Hopkins for the treatment of
her malignant tumor, the surgeon removed healthy and cancerous
cervical tissue samples for Dr. Gey before putting tubes of
radium into her cervix as treatment. Henrietta never knew about
the samples.
In 1951, no one had successfully grown cells outside of the
body. One of the problems was finding a suitable culture medium
— chicken plasma, human umbilical cord blood, and calf fetuses
were only some of the materials being used. Another problem was
also inadequate sterilization processes,which led to culture
contamination. Although Dr. Gey was adamant about paying keen
attention to proper sterilization his own labs, he still couldn’t
grow cells. That is until Henrietta’s cancerous cells, renamed
HeLa, came along.
As HeLa grew, so did Henrietta’s cancer. She tried to keep
up a normal life by going dancing, traveling to Clover on the
weekends, and visiting her mentally disabled daughter at
Crownsville State Hospital. Life was hard for her, however, with
the x-ray cancer treatments turning the skin of her torso black
and the radium tubes making her infertile. No one had told her
any of the side effects of her treatments.
Rebecca realized that the only way to tell Henrietta’s story
was to get the cooperation of the Lacks family. She calls Dr.
Roland Pattillo for help, but he is hesitant to help her contact
the family until she makes it clear that she is aware of the how
African Americans have been medically mistreated over the years.
He eventually gives Rebecca the number of Henrietta’s sole
surviving daughter, Deborah.
Things seem to go well during Rebecca’s first call with
Deborah, who is rather incoherent but excited about the prospect
of a book about her mother. The second call, however, does not go
well at all and Deborah tells Rebecca to “convince the men” that
the family should cooperate on the book. A call to Day only
results in a hang up.
When Dr. Gey revealed that he had created an “immortal” cell
line, there was very little interest due to decades of false
reports about similar accomplishments. The most famous was in
1912 when Alexis Carrel claimed to have developed an immortal
chicken heart cell culture. Not only did the culture end up being
bogus, Carrel turned out to be a racist Nazi supporter.
Henrietta’s doctors deemed her treatments a success and the
cancer gone despite her continued pain. It was an era when
doctors always knew best, especially when the patient was an
African-American woman, and it was quite a while before they
examined Henrietta more carefully. By that time there was a huge,
inoperable tumor in Henrietta’s abdomen that spread so rapidly
that it seemed like a new tumor grew every day. The doctors
increased her radiation therapy and eventually hospitalized her,
but the pain grew worse and worse.
In the present day, Rebecca travels to Baltimore with the
hopes of interviewing Sonny, one of Henrietta and Day’s sons, but
he doesn’t return her calls. She goes to Turners Station to talk
with Courtney Speed, who has tried to create a Henrietta Lacks
museum, but she won’t talk to Rebecca without the family’s
blessing. Instead, Speed shows Rebecca an old BBC documentary
about Henrietta and HeLa, which gives Rebecca the idea to go to
Clover and interview the extended Lacks family.
Rebecca visits Clover, VA to meet the extended Lacks family.
She finds that the town has almost completely disappeared, but
that “Lacks Town” is still home to quite a few family members.
The most forthcoming of the Clover Lackses is Cootie, Henrietta’s
cousin. After talking to him, it is clear to Rebecca that there
has been a lot of confusion over the immortality of Henrietta’s
cells. Cootie believes that they were created through voodoo.
Although Day originally refused to allow the Johns Hopkins
doctors to do an autopsy, he consented after Dr. Gey said that
the tissue samples could help his children someday. Mary Kubicek,
Gey’s assistant, was in charge of taking those samples. Seeing
Henrietta’s chipped toenail polish was the first time that it
dawned on her that HeLa came from a real person; she had always
thought of the tissue samples in the abstract.
Because HeLa was so hearty and easy to grow, it quickly
became the “workhorse” for cell research. The Tuskegee Institute
built the first cell production factory using HeLa and grew
around 20,000 test tubes of cells a week. They would send samples
to any interested scientist for about $10 each. As the cell
culture industry began to take off, researchers developed
standardized methods for working with HeLa and made great medical
and scientific advancements using the cells for experimentation.
It wasn’t until Microbiological Associates launched the first
large scale for-profit cell distribution center, however, that
cell and tissue culture became a multibillion dollar industry.
Once word got out about HeLa, the press wanted to do stories
on the woman behind the cells. Dr. Gey and Johns Hopkins did not
want to reveal Henrietta’s name because doctor-patient
confidentiality was beginning to be a standard practice.
Eventually a Collier’s Magazine reporter got Gey to tell the
story on the condition that the donor be called Helen L. In the
article Gey also said that he had taken tissue samples after the
patient’s death, not before.
When Henrietta died, Sonny was four, Deborah two, and Joe
only one year old. Lawrence was a teenager, but he dropped out of
school and joined the army, which took him away from home for two
years. The younger children found themselves at the mercy of
Ethel and Galen, Henrietta’s cousins who moved into Day’s house
to help with the children. Ethel severely beat the children and
Galen sexually molested Deborah. It wasn’t until 1959 when
Lawrence returned and moved in with Bobbette that anybody did
anything about the abuse. Bobbette moved the children to her
house and told Ethel and Galen never to touch the children again.
Rebecca visits another Clover cousin named Cliff on the
advice of Cootie. Cliff shows her the ruins of the old home-house
where Henrietta grew up and Henrietta’s mother’s grave.
Henrietta’s grave is unmarked. He explains that all of the black
Lackses are descended from two white plantation owners —
brothers named Albert and Benjamin Lacks.
After her visit to the Lacks graveyard, Rebecca interviews
one of the white Lacks families, but they deny any relation to
the black Lackses. Gladys, Henrietta’s sister, tells Rebecca that
the white and black Lackses are related, however, even if they
don’t mix much.
During the early 1960s, researchers began to fear that HeLa
had contaminated other cells studied in their labs. They decided
to reform their methods for handling cells and create a
collection of known cell lines to use as reference when
determining whether a cell culture has been contaminated.
While the science world was dealing with HeLa-related
problems, Henrietta’s children were struggling to find their
place in the world. Lawrence and Sonny were doing fine, but
Deborah got pregnant when she was 16. Bobbette helped her finish
high school and even helped her leave Cheetah, her abusive
husband, when the time came. Joe, the youngest of the siblings
was filled with anger and ran into the most trouble. After being
discharged from the army for “failure to adjust,” he killed a man
in Baltimore for which he was sentenced to 15 years in jail.
While he was doing his time, Joe converted to Islam and changed
his name to Zakariyya.
In 1966, a geneticist determined that HeLa cells were found
in 18 cell lines commonly used for medical research. The
widespread contamination invalidated years of work and supposed
scientific advancement, especially in cancer research. Scientists
started research to identify HeLa cells so that they could better
determine whether or not a cell line was contaminated.
Henrietta’s name first became public after George Gey died
of pancreatic cancer and his colleagues went through his notes to
write an article about HeLa in his honor. Others did not catch on
for some time, however, and most articles still referred to the
donor as Helen Lane for a few more years. It was not until a
premier research journal published an article in 1973 proclaiming
the real name of the woman whose cells gave birth to HeLa that
Henrietta Lacks became famous.
Michael Rogers wrote an article for Rolling Stone magazine
about Henrietta and HeLa in 1975. When he interviewed the family,
he tried to explain to them that the “immortality” of the cells
did not mean that they were immortal or that they would get
Henrietta’s cancer. The Lackses were still confused over the
cells, but they did understand that people had made a lot of
money selling them.
While her brothers became obsessed with getting their fair
share of HeLa proceeds, Deborah tried to learn more about her
mother. She researched HeLa, but did not understand most of what
she read. She became convinced that her mother felt everything
that was done to her cells, something that disturbed Deborah to
the core.
The early 1980s saw the Lacks family in worse times than
ever before. Zakariyya had finished his prison term, but still
couldn’t hold down a job. Ironically, the only way he could make
money was to serve as a medical research subject. Sonny landed in
jail for trafficking drugs. Deborah’s son, Alfred, was constantly
in and out of jail for minor offenses. Only Deborah seemed to be
doing better — remarried to a seemingly good man and working
various jobs.
Deborah still continued to research her mother’s life,
death, and “immortality.” One of the books that she found,
though, provided in depth information about her mother’s medical
history. Such detail could only have come from Henrietta’s
medical records, and Deborah wondered how the author could have
gotten a hold of them.
By the late 1990s, Henrietta’s story was becoming
increasingly well-known. The BBC made a documentary about her,
Raymond Pattillo organized the first annual HeLa Cancer Control
Symposium, and Courtney Speed and Barbara Wyche tried to found a
museum in Turners Station honoring Henrietta. The Lacks siblings
were proud of the recognition their mother was receiving but were
resentful that they still couldn’t afford their own healthcare.
Johns Hopkins continued to take the stand that their medical
practices regarding Henrietta were consistent with those of the
time and that they had never received any profits from the sale
of HeLa.
Adding to the family’s confusion during this time was Sir
Lord Keenan Kester Colfield, a con man who tried to get the
Lackses to release Henrietta’s medical records to him. Johns
Hopkins identified the con and protected the Lacks family, which
led Colfield to sue the hospital and the family. The fallout from
the lawsuit was that Johns Hopkins cancelled plans to honor
Henrietta and Deborah had a nervous breakdown.
Deborah takes Rebecca to meet the volatile Zakariyya,
something that Rebecca knows must happen but is terrified to do.
Zakariyya has a few outbursts but generally controls his temper.
He explains that he is resentful that the doctors took
Henrietta’s cells and then used them to help everyone except the
Lacks family. Although Deborah blames Ethel’s abuse for
Zakariyya’s anger problems, he believes that fighting the tumor
while he was in Henrietta’s womb made him so mean.
Rebecca takes Deborah and Zakariyya to Cristoph Lengauer’s
lab in Johns Hopkins where he shows them HeLa cells. He also
gives them a long overdue explanation of how the cells are grown
and used, and what it means when everyone says that Henrietta’s
cells are “immortal.” The visit does a lot to clear up decades of
misunderstandings, and both Deborah and Zakariyya are emotionally
thankful.
The night that Deborah gives Rebecca the medical records
turns out to be a long and volatile one. Soon after giving
Rebecca the papers, Deborah comes back and demands that they go
through everything together. She accuses Rebecca of being paid to
take records and hurls other insults as well. When Rebecca
finally yells back at Deborah, the tension is broken and Deborah
opens up again. The next day Deborah appears covered in hives,
but trying to make things right with a hesitant Rebecca.
Although Deborah returns to Baltimore to get medical
attention for her hives, Rebecca stays in Clover to talk to one
of the cousins about the prayer session. He explains to her that
he and most of the Lacks family believe that HeLa is the
spiritual body of Henrietta. He points to certain passages in the
Bible that helps Rebecca understand how religious explanations of
HeLa would make more sense to them than the scientific
explanations.
Deborah’s doctor tells her that her blood pressure and blood
sugar are too high, and that she needs to reduce her stress
levels. This explains the erratic behavior during the trip to
Clover. Since Deborah can’t go on anymore research trips, Rebecca
keeps her posted on developments, though she is sure to only
mention the good things. Deborah seems to be in higher spirits
and eager to learn about the science behind the HeLa cells. Lack
of money and a stroke keep Deborah from going forward with her
plans for self betterment. Rebecca observes that Henrietta’s
children won’t benefit from HeLa, but that it is not too late for
the grandchildren and other future generations of Lackses.
It is 2009 Rebecca has finally finished the book and wants
to read it to Deborah. After numerous calls that went unreturned,
Rebecca calls Sonny and learns that Deborah died a little over a
week earlier. It is a great blow to Rebecca, but she is knows
that Deborah was happy in the end. Although the older Lacks
family members were still struggling, the grandchildren were all
doing well. Rebecca remembers her last meeting with Deborah, who
said that she would like to die calmly and maybe come back as a
HeLa cell like her mother and do some good for the world.
Rebecca believes that there are two major issues regarding
research using human tissue: money and consent. There is a lot of
debate around whether doctors have to tell patients how much
their tissues could be worth, and whether the patients have
rights to any profits. And although there are numerous
regulations requiring that patients give informed consent for
their tissues to be used in research, tissue rights advocates
want patients to have more control.
Virology Concepts:
1. From your observations, what went wrong in Henrietta Lacks’ cervical cancer cells
that made them cancerous?
Research into HPV eventually uncovered how Henrietta’s
cancer started: HPV inserted its DNA into the long arm of her
eleventh chromosome and essentially turned off her p53 tumor
suppressor gene (Skloot, 2009).
2. How does infection with human papilloma virus (HPV) increase the risk of cervical
cancer? What cellular process is affected by this virus?
When a woman is exposed to genital human papillomavirus
(HPV), her immune system usually prevents the virus from doing
serious harm. But in a small number of women, the virus survives
for years. Eventually, the virus can lead to the conversion of
normal cells on the surface of the cervix into cancerous cells.
At first, cells may only show signs of a viral infection.
Eventually, the cells may develop precancerous changes. This is
known as cervical intraepithelial neoplasia, which usually goes
away spontaneously. In some cases, however, cervical
intraepithelial neoplasia may progress to invasive cervical
cancer (Division of STD Prevention, 1999). HPV inserts its DNA
into the DNA of the host cell, where it produces proteins that
lead to cancer (Boshart, 1984).
3. What was the theory of spontaneous transformation? What significance did Gartler’s
findings have for this theory? Why was this report referred to as the “HeLa Bomb”?
Spontaneous transformation is a phenomenon where a normal
cell growing in culture becomes malignant (Skloot, 2009).
Gartler’s findings that normal cells didn’t spontaneously become
cancerous and that they were simply taken over by HeLa meant that
spontaneous transformation does not exist.
The report was called HeLa Bomb because the information that
Gartler shared was like someone dropping a bomb, it surprised
everyone and changed a lot. It changed the lives of many people,
especially the scientists who happened to have HeLa infected cell
lines. Gartler figured out that all the cell lines had one thing
in common. They all had a rare genetic marker called G6PD-A. He
knew that they were all contaminated by HeLa because G6PD-A was
only found in African Americans. HeLa was kind of like a virus.
It could easily contaminate cell cultures with one of its cells.
It could travel through the air on dust particles and then
contaminate a whole cell culture with just ONE CELL. This caused
a huge problem for researchers because HeLa was all around and
could infect any cell culture that they made. Gartler's talk also