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  • Essay / Missing Henrietta's Immortal Life: Ethical and Racial Issues

    HeLa cells were the first human cell line capable of being successfully cultured indefinitely. They are now widely available for purchase for use in medical research studies and have supported the development of many scientific innovations and techniques, such as the polio vaccine, cell cloning and genetic mapping, since their initial culture in 1951. The Life of Henrietta Lacks is a biographical novel written by Rebecca Skloot that traces the life and history of the woman whose original cells were cultured, Henrietta Lacks. Henrietta died of cervical cancer shortly after her visit to Johns Hopkins, where the original cells were collected without consent. Skloot tells the story from the perspective of Henrietta's children, who continue to live in extreme poverty despite the prosperity the medical research industry has enjoyed for decades, made possible by growing 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 for subjects research. 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 should not be banned"? Get an original essay One of the main questions raised by Henrietta Lacks' story is that of patient autonomy, particularly with regard to concerns 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 went to 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 subsequently sent to George Gey's research laboratory for culture, nor when further samples were taken from her tumor during subsequent surgeries. Eventually, after the cells began to grow indefinitely, the cell line was shared among many of Gey's colleagues. Gey believed the cell line belonged to him because his lab had grown the cells, although the Lacks were completely unaware of this. In Gey's mind, Henrietta's cells were completely separate from her as a person. Additionally, Henrietta was devastated after realizing she had become infertile following her radiotherapy treatments, even though 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 its treatment, nor did they understand what it meant when her cells were cultured after they discovered it more late. The story highlights the importance of informed consent as part of patient autonomy. The trend of conducting procedures on the Lacks without informed consent continued years after Henrietta's death when researchers were sent to draw blood from her children to experiment with genome mapping. The children agree to the blood test because they mistakenly believe it is a test to see if they carry the same disease as Henrietta. The fact that the researchers did not clearly state the purpose of the blood test indicates that they viewed the Lacks as mere research subjects. The problem continues whenResearchers publish the results and reveal the identity of the children, also without consent. An implicit question underlying the case of Henrietta Lacks and her family is whether the pursuit of medical knowledge should trump an individual's rights to their body before and after samples are taken. 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 her consent. own opinion on the matter. Another important theme of the book was the consistent lack of access to health care that the Lacks experienced over generations due to poverty and discrimination. The dark irony of Henrietta's case is that, despite her unknowing contribution to the medical field, she and her family were continually excluded from it. It is clear that the family did not have access to preventative care, as Henrietta's neck mass grew uncontrolled until it was too late. She also had to travel 20 miles to the nearest hospital, Johns Hopkins, which treated African Americans during the Jim Crow era. In addition to her cancer, Henrietta also suffered from untreated syphilis and gonorrhea. Her pain was often ignored by doctors, who repeatedly underestimated the severity of her condition to the point where her cancer became inoperable and her pain unmanageable. Henrietta's children were also deeply affected by poverty and discrimination. Due to Henrietta's untreated infections, one of her children, Elsie, was developmentally delayed and also suffered from epilepsy which remained untreated until Henrietta was no longer able to cope. take care of her. At this point, Elsie was sent to an institution where she was severely abused until her death. As Skloot learns more about Henrietta's story by talking to her living family, she also learns that many Lacks naturally 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 due to their state of health. Additionally, no family member has health insurance and many are already in heavy debt from past medical bills. This case is an extreme example of racialized and disparate health care outcomes in the United States. In addition to the discrimination and lack of access that was specific to Lacks' experience, Skloot also emphasizes targeted racist practices that were common in the medical and research fields. areas throughout history. The traumatic and racist experiences that Henrietta and her family endured were part of a larger institutional structure that systematically targeted minority populations, 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 is when Chester Southam, a researcher at the Sloan-Kettering Institute, injected HeLa cells into several people without informed consent in an attempt to determine whether the scientists were at risk of infection while working with them in the laboratory. Although theresearch subjects consented to being injected, they did not know that the cells came from cancerous tissue, so their consent could not be considered informed consent. After preliminary testing, he decided to test the Ohio state prison population. Prison populations in the United States are currently and historically have been disproportionately composed of poor African Americans. Southam infected hundreds of people with cancerous HeLa cells without telling them that the cells were cancerous. Particularly telling was the fact 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 demonstrate how the medical research community often treats vulnerable populations as research subjects rather than people with agency. Especially when it comes to the prison population, this practice can be seen as tantamount to treating them like lab rats, given the power dynamics involved and the lack of information provided. The lack of respect for African Americans in the community in general and particularly in the prison system results in the dehumanization of the population. Skloot concludes the book with a final update on Henrietta's family, which remains mostly in poverty. Two of his children died from heart attacks and one of his children is in huge debt after a medical procedure. However, Henrietta's grandchildren and great-grandchildren are doing relatively well. The ending of the book is bittersweet, as is the story of HeLa cells, which brought enormous medical innovations despite cancer, discrimination and poverty. The take-home message of the book is that research on human subjects must be approached in an ethical manner. manner. The history of medical research in the United States has been marked by racism and classism. The story of Henrietta Lacks and her family highlights the importance of adequate consent and compensation of subjects and donors. It is important for future researchers and doctors to understand this in order to work to repair the damage done in the past and rebuild relationships and trust with vulnerable populations. What I found particularly interesting was how the African American medical community had created mythical stories about the racism they experienced in real life. For example, one of Skloot's informants likens Johns Hopkins doctors to the "bogeyman" and explains that children were told to go home before dark to avoid being taken away by the researchers. Skloot also explains that some stories date back to slave times and were perpetuated by slave owners in order to intimidate them. While many doctors enter the medical field to fulfill their passion for helping others, the fact that horror stories about medical advancement at the expense of poor African Americans have lasted for centuries is very telling that the Racism and classism continued to exist. be published in medicine and research. Keep in mind: this is just a sample. Get a personalized article from our expert writers now. Get a Custom Essay For this reason, I would recommend this book to others, especially those who intend to enter the medical field. field. Institutionalized discrimination has had a significant, but behind-the-scenes, influence on medicine and research for many years. Attempt to reverse the, 90(4),.