Topic > The Immortal Life of Henrietta Lacks: Ethical and Racial Issues

HeLa cells were the first human cell line capable of being cultured successfully and indefinitely. They are now widely available for purchase for use in medical research studies and have been the means for the development of many scientific innovations and techniques, such as the polio vaccine, cell cloning, and genetic mapping, since their cultivation initial in 1951. Life of Henrietta Lacks is a biographical novel written by Rebecca Skloot that traces the life and story of the woman from whom the original cells were grown, Henrietta Lacks. Henrietta died of cervical cancer soon after her visit to Johns Hopkins, where the original cells were collected without consent. Skloot tells the story through the perspective of Henrietta's children, who continue to live in extreme poverty despite the prosperity that the medical research industry has enjoyed for decades, made possible by culturing their mother's cells. In telling Henrietta's story, Skloot reveals a long history of exploitation and neglect of African American populations in the name of medical research in the United States, raising important ethical questions regarding consent and compensation of research subjects. In this article we will research and analyze The Immortal Life of Henrietta Lacks: Ethical and Racial Issues. Say no to plagiarism. Get a tailor-made essay on "Why Violent Video Games Shouldn't Be Banned"? Get an original essay One of the main issues raised by Henrietta Lacks' story is that of patient autonomy, particularly as it pertains to medical research. The lives of Henrietta and her children are continually exposed to the public and exploited for medical research without their consent. When Lacks visited Johns Hopkins for her cervical exam, a sample of the mass on her cervix was taken for biopsy. However, Henrietta was not informed when the tissue sample was later sent to George Gey's research laboratory to be cultured, nor when additional samples were taken from her tumor in subsequent surgeries. Eventually, after the cells began to grow indefinitely, the cell line was shared by many of Gey's colleagues. Gey felt the cell line was his to share because his lab had grown the cells, even though the Lacks were completely unaware of this. In Gey's mind, Henrietta's cells were completely separate from her as a person. Furthermore, Henrietta was shocked after realizing that she had become infertile due to radiation treatments, although she had not been warned beforehand that infertility was a side effect. Throughout the book, it is clear that neither Henrietta nor her family fully understood her illness or her treatment, and that they did not understand what it meant when her cells were cultured after they later found out. The story highlights the importance of informed consent as part of patient autonomy. The pattern of conducting procedures on the Lacks without informed consent continues years after Henrietta's death, when researchers are sent to draw blood from her children to experiment with genome mapping. The children agree to the blood draw because they mistakenly believed it was a test to see if they carried the same disease as Henrietta. The fact that the researchers did not clearly specify the purpose of the blood sample is indicative of the fact that they regarded the Lacks as mere research subjects. The issue continues further when researchers publish the results and reveal the identity of the children, even without consent. An implicit question toThe basis of the case of Henrietta Lacks and her family is whether the pursuit of medical knowledge should trump an individual's rights to his or her own body both before and after sample collection. This case is unique because the lack of informed consent was discovered years after the cells had been cultured and used in the development of multiple technological innovations and also because the original patient was no longer alive to express his opinion on the matter. Another major theme of the book was the consistent lack of access to healthcare that the Lacks experienced for generations due to poverty and discrimination. The dark irony of Henrietta's case is that, despite her unwitting contributions to the medical field, she and her family were continually excluded from it. It's clear the family didn't have access to preventative care, because Henrietta's cervical mass grew uncontrollably until it was too late. He also had to travel 20 miles to the nearest hospital, Johns Hopkins, which would treat African Americans during the Jim Crow era. In addition to cancer, Henrietta also suffered from untreated syphilis and gonorrhea. His pain was often ignored by doctors, who repeatedly underestimated the severity of his condition to the point where the cancer became inoperable and the pain unmanageable. Henrietta's children were also deeply affected by poverty and discrimination. Due to Henrietta's untreated infections, one of her daughters, Elsie, had developmental delay and also suffered from epilepsy which remained untreated until Henrietta was no longer able to care for her. At this point, Elsie was sent to a facility where she suffered severe abuse until her death. As Skloot learns more about Henrietta's story by talking to her living family, he also learns that many of the Lacks understandably have an extreme distrust of doctors in addition to their lack of access. For example, Henrietta's husband, Day, suffers from gangrene in his feet, and her son, Sonny, suffers from heart disease. Both family members refuse treatment for their conditions. Furthermore, none of the family members have health insurance and many of them already have huge financial debts due to past medical expenses. This case is an extreme example of racialized and disparate health outcomes in the United States. In addition to the discrimination and lack of access that were specific to the Lacks' experience, Skloot also highlights the targeted racist practices that were common in the medical and research fields. fields throughout history. The traumatic and racist experiences that Henrietta and her family experienced were part of a larger institutional structure that consistently targeted minorities, particularly African Americans, for the benefit of medical advancement without consent or compensation. For example, Skloot references the infamous syphilis study conducted on African Americans at the Tuskegee Institute without their consent, as well as the "Mississippi appendectomies," which were hysterectomies performed on African American women without their knowledge or consent. Another example from the book was when Chester Southam, a researcher at the Sloan-Kettering Institute, injected HeLa cells into multiple people without informed consent in an attempt to determine whether scientists were at risk of infection when working with them in laboratory conditions . Even though the research subjects consented to the injection, they were not aware that the cells came from cancerous tissue, so the consent could not be considered informed consent. After preliminary testing, he decided to test the Ohio state prisoner population. The prison populationin the United States is currently and historically made up disproportionately of poor African Americans. Southam infected hundreds of people with cancerous HeLa cells without telling them that the cells were cancerous. Particularly telling was that, when asked about his actions, Southam responded that informed consent was not necessary because the research subjects were too ignorant to understand the study. These practices show how the medical research community often treated vulnerable populations as research subjects rather than as people with agency. Especially regarding the prison population, the practice can be seen as treating them like lab rats, considering the power dynamics involved and the lack of information provided. The lack of respect for African Americans in the community at large and especially in the prison system results in the dehumanization of the population. Skloot ends the book with a final update on Henrietta's family, who remain mostly in poverty. Two of his children died from heart attacks and one of his children is extremely in debt due to a medical procedure. However, Henrietta's grandchildren and great-grandchildren are doing relatively well. The book's ending is bittersweet, just like the story of HeLa cells, which brought about enormous medical innovations despite coming from cancer, discrimination and poverty. The book's fundamental message is that human subjects research should be approached ethically. manner. The history of medical research in the United States has been plagued by racism and classism. The story of Henrietta Lacks and her family highlights the importance of adequate consent and compensation of subjects and donors. This is important for future researchers and clinicians to understand as they seek to repair the damage done in the past and to rebuild relationships and trust with vulnerable populations. Something I found particularly interesting was how the African American medical community had created stories similar to myths about the racism they had experienced in real life. One of Skloot's informants, for example, compares Johns Hopkins doctors to the "bogeyman" and explains that children were told to go home early at night to avoid being caught by researchers. Skloot also explains that some stories originated in the slave era and were perpetuated by slave owners to intimidate them. While many doctors enter the medical field to satisfy their passion for helping others, the fact that horror stories about medical progress at the expense of poor African Americans have survived for centuries is highly indicative of the fact that racism and classism have continued to spread. be issued in the field of medicine and research. Please note: this is just an example. Get a custom paper from our expert writers now. Get a Custom Essay For this reason, I would recommend this book to others, especially those planning to enter the field of medicine. field. Institutionalized discrimination has had a major influence, albeit behind the scenes, in medicine and research for many years. Seeking to reverse the effects of centuries of racism in perpetuating differential health outcomes requires careful and active reflection by the scientific community. While there have been movements in medical education to increase awareness and empathy for low-income and minority populations, The Immortal Life of Henrietta Lacks is a powerful book that brings home the experiences of the medically underserved . Furthermore, since medical technology and research, 90(4),.