Human Experimentation Research Paper

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 19^th 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.