Shelby Brown
English 191- 17
Jack Hennes
03 December 2012
The Immortal Life of
Henrietta Lacks and Human Experimentation
Rebecca Skloot
begins her novel, The Immortal Life of
Henrietta Lacks with a quote by Elie Wiesel, taken from her writing, The Nazi Doctors and the Nuremburg Code:
“ We must not see any person as an
abstraction. Instead, we must see in every person a universe with its own
secrets, with its own treasures, with its own source of anguish, and with some
measure of triumph” [Wiesel]. In 1951 a sample of cells were extracted from
Henrietta Lacks, more commonly known as HeLa, without her knowledge. While
these cell samples became a revolutionary tool in science, the disregardful
manner in which these cells were taken has been publicly scrutinized following
the publication of Skloot’s novel, The
Immortal Life of Henrietta Lacks due to their resemblance to human
experimentation conducted during the Nuremberg trials in Nazi Germany during
WWII and other similarly cruel accounts. Experimentation on humans as been
documented throughout history, evidently dating as far back as the early 19th
century, and this immoral conduct still continues today. While the use of
humans like Henrietta Lacks in scientific research may provide crucial benefits
to the science and medical fields, if misused and executed deceitfully upon
participants’, it is wrong. Readers of The
Immortal Life of Henrietta Lacks witnessed a true depiction of the
suffering and exploitation endured by a woman and her family due to human experimentation
and hopefully through this example, researches will ensure that all research
conducted on humans in the future is ethical, voluntary, beneficial, and
informed.
Human experimentation is defined in
science as “A set of scientific activities, the primary purpose of which is to
develop or contribute to generalize knowledge about the chemical, physiological
or psychological processes involved in human functioning [Behrmann 4]. Ethical
issues regarding human experimentation were first brought to public attention
in 1833 when army surgeon physician, Dr. William Beaumont constructed a human
medical experimentation code, which emphasized the importance of experimenting
on humans but also asserted a list of requirements imposing that human subjects
must give their verbal as well as
written informed, voluntary consent in order to be used in an experiment [Veracity
1]. Looking back upon history, however, this code was frequently disobeyed, mostly
in cases of experimentation involving African Americans and other impoverished
citizens. One of the most notorious accounts of exploiting underprivileged
African Americans was during the infamous Tuskegee syphilis study that took
place in Tuskegee, Alabama from 1932- 1972. During this study, 400 poor African
American men were diagnosed with syphilis, however, these men were never
informed that they were infected with syphilis or provided with the necessary
treatment for it but instead, scientists used the men as lab rats so that they
would be allowed to follow the symptoms and progression of the disease [Veracity
1]. One of the most significant, as well as sickening accounts of brutal
experimentation administered on humans were those documented during the
Nuremberg Trials in 1945- 1946 in Germany. The Nuremberg Trials was a series of
military tribunals, which included the prosecution of several distinguished
Nazi leaders on account of the merciless Nazi human experimentation that was
conducted during WWII. Nazi human experimentation was conducted on a large
number of Jewish prisoners who were coerced into uninformed participation.
Experiments endured by these victims included experiments on twins, freezing
experiments, sterilization experiments, and more. At the end of the trial,
however, doctor’s argued that there were no laws enforced at the time regarding
medical experimentation. As a result, the Nuremberg code was drafted which
calls for voluntary consent from patients, avoidance of unnecessary pain/
suffering, and the belief that experimentation will not end in death or
disability to the subjects when conducting medical experiments [Forsythe 91].
This set of codes relating to human experimentation and informed consent were
disregarded by scientists once again during the 1950’s which came to be a time
of this country’s most horrific and callous human medical experimentation
abuses. On February 1, 1951, Henrietta Lacks was admitted to John Hopkins
University clinic located in Baltimore Maryland regarding symptoms that were later
discovered to be related to a malignant tumor in her cervix. Samples of
Henrietta’s cancerous cells were unknowingly extracted from the woman,
experimented on, and later went on to become universally significant to the
science and medical world. Robbing Henrietta Lacks of the knowledge of her
cells’ use was not even the only sinister account of human medical
experimentation taking place during this time at John Hopkins Hospital as it
was also the orchestrator of secretive cold war human radiation experiments. It
is unfathomable to think of the doctors and scientists who could be insensitive
enough to execute such dangerous and painful experiments on other human beings,
however, a study done in 1961 eerily demonstrated similar human experiments
conducted with ease by average male test subjects. Men in this study were
instructed to shock participants deemed as “learners” for every wrong answer
they provided to a question that was asked. Unaware that these “learners” were
actually actors and not, in fact, receiving real electric shocks, the men appallingly
continued to administer increasingly high levels of shocks even when the actors
were exhibiting blatant signs of anguish [Veracity 1].
Scientific research involving human
subjects may have gone askew in some cases like the Tuskegee syphilis study and
Nazi human experimentation but we also must remain conscious of the fact that
the United States is responsible for some of the most profound scientific
breakthroughs, especially in the field of medicine. Experimentation inflicted
on humans has concluded detrimentally in the past, however, advancements in
medicine especially have benefited the lives of billions of people around the
world. Even in the case of the Tuskegee syphilis studies, scientists initiated
the research with the good intentions of observing the disease attentively in
order to concoct a cure and save the lives of those infected with it in the
future. Henrietta’s body was exploited by doctors, but manipulation of these
cells ended up being crucial research aspects in developing a polio vaccine, as
well as cloning and gene mapping methods. Henrietta’s cells were specifically
essential in researching the development of a polio vaccine because “The
trouble was, at that point, the cells used in neutralization tests came from
monkeys, which were killed in the process… Doing neutralization tests using
monkey cells would cost millions are dollars. So the NFIP went into overdrive
looking for a cultured cell that could grow on a massive scale and would be
cheaper than using monkeys [Skloot 94]. Without the use of humans in
experiments, no new drugs would ever be able to develop because humans are
crucial in demonstrating their effectiveness. Some opposers of human
experimentation argue that the practice is unethical. This is not the case for
all research. In the 1970’s, for example, the National Research Act creating
the National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research was signed into law. One of the key requirements of gaining
commission approval is to obtain consent from all study participants which is
not presented to participants in a mere form but involves a whole process
[Norrgard]. At times it can be difficult to gain informed consent from
participants, however because some drugs have very complex modes of action,
which carries poorly understood risks that can be challenging to explain
accurately to volunteers. Ethical issues concerning human experimentation also
pertain to the dangerous risk scientists are subjecting participants to,
however, it must be understood that research concerns itself with measuring the
effectiveness and risk of a drug against a control group. These experiments
tend to require a lot of time, and tend to lengthen the approval process.
Scientists are most concerned with treatment resulting from this research and
healing as many people as rapidly as possible. If a drug’s effectiveness is
evident, scientists feel that that is a good reason to give the drug to the control
group and begin to distribute it to as many people as possible. While this
procedure increases the risk that negative effects will arise in time, the
action shortens the approval process [Drug Testing in Humans].
The Immortal Life of Henrietta Lacks has
been deemed as “every ethicists nightmare” [Catlin 204]. The United States
claims to be the world leader in medicine [Veracity 1] but there is a coveted
dark side to western medicine, a sliver of which was exposed in Skloot’s novel.
Throughout history, shocking medical experiments have often been performed on
impoverished people and their children and often without these subjects’
knowledge. Scientists are able to conduct such atrocious studies on humans with
ease and satisfaction because they simply do not view them as real people but
rather, scientific guinea pigs. Current medical practices tend to view the
public as no more than a data and material resource. This ethically
questionable aspect of medical research is exemplified in The Immortal Life of Henrietta Lacks when the name of the woman
behind the HeLa cells is falsely identified as Helen Lane as opposed to her
real name, Henrietta Lacks. This disregardful manner in which experiments are
conducted on human is unethical because subjecting live human beings to
scientific experiments that are sometimes cruel, sometimes painful, and always
a dangerous. Therefore, volunteers risking their health for science should be
respected, praised, and compensated for their participation. Scientists were
especially able to disregard their subjects during the time that Henrietta’s
body was exploited due to the fact that many participants were unwitting
African Americans who were poor and therefore, powerless much like Henrietta
Lacks. John Hopkins Hospital was especially guilty of this injustice. For
example, Skloot recounts some of the Lackses explanations of “night doctors”:
“Since at least the 1800’s, black oral history has been filled with tales of
‘night doctors’ who kidnapped black people for research. And there were
disturbing truths behind these stories… Many doctors tested drugs on slaves and
operated on them to develop new surgical techniques, often without using
anesthesia… Because of this history, black residents near Hopkins have long
believed the hospital was built in a poor black neighborhood for the benefit of
scientists- to give them easy access to potential research subjects” [Skloot
166]. Scientist’s unethical treatment of humans that they are subjecting to
experimentation demonstrates a callous abuse of power. In response to the Human
Radiation Experiments that took place during the 1950’s, for example, Dr. Paul
Beeson stated “We were taking care of them, and felt we had a right to get some
return from them, since it wouldn’t be in professional fees and sine our taxes
were paying their hospital bills” [The Commercial Exploitation of Henrietta
Lacks]. Researchers also exhibit abuse of their power in failing to inform
participants on what they are being subjected to in experiments and what this
research will be used for. People participating in medical experiments should
be provided with the relevant information needed to make an informed decision
about participation. A factor of informed consent should also include informing
patients in terms that are easily understood. Henrietta Lacks demonstrates that
she was a victim of this particular kind of uninformed consent when Skloot states,
“It was no surprise that Henrietta hadn’t come back all those times for follow-
up. For Henrietta, walking into Hopkins was like entering a foreign country
where she didn’t speak the language” [Skloot 16]. Finally, human
experimentation is also unethical when doctors benefit from research and the
humans subjected receive no compensation. While the health of countless people
all over the world were benefitting from the distribution and use of Henrietta
Lack’s cells, her own family could not even afford health care. For example,
Rebecca Skloot mentions in her novel, The
Immortal Life of Henrietta Lacks, “Black scientists and technicians, many
of them women, used cells from a black woman to help save lives of millions of
Americans, most of them white” [Skloot 97], while Henrietta’s daughter, Deborah
states “But I always have thought it was strange, if our mother cells done so much
for medicine, how come her family can’t afford to see no doctors” [Skloot 9]?
HeLa was the world’s first and only human cell line. It not only meant millions
for John Hopkins University but also guaranteed international fame, glory, and
riches for Dr. Gey who discovered the cells, while racism, poverty, and
mourning continued for Henrietta Lacks’ unknowledgeable and powerless family.
Worst of all, many individuals as well as institutions guilty of conducting
these inhumane crimes against humanity have not so much as apologized for the
countless victims that have unwittingly been disfigured and killed in these
studies.
When questioned about his knowledge
of the use of Henrietta Lack’s cells, Henrietta’s husband, Day responds, “Them
doctors never said nuthin about keepin her alive in no tubes or growin no
cells. All they told me was they wanted to do a topsy see if they could help my
children. And I’ve always just knowed this much: they is the doctor, and you
got to go by what they say. I don’t know as much as they do. And them doctors
said if I give em my old lady, they could use her to study the cancer and maybe
help my children, my grandchildren” [Skloot 164- 165]. There is no way to
reverse the injustice done to Henrietta Lacks and her family, as well as many
others just like her, however, the publication of The Immortal Life of Henrietta Lacks put a human face behind
science. As new discoveries in science and medicine become increasingly more
important, we must remember to not lose sight of the real stories behind this
research. Henrietta Lack’s story is just one example in a long history of
maltreatment, especially that of African- Americans, in medical research. In
order to insure that no one else suffers from unethical experimentation, all
scientific researcher should be regulated and follow a set of principles which
guarantees respect for their subjects, beneficence for their subjects, and
justice for their subjects. Henrietta Lacks and her family were exploited and
abused due to human experimentation, however, if researchers carefully follow
this set of research guidelines, no individuals or their families will have to
endure that injustice again.
