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The Immortal Life of Henrietta Lacks: Ethical and Racial Issues

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HeLa cells were the first human cell line able to be successfully and indefinitely cultured. They are now widely available for purchase to use in medical research studies and have been the medium for 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 Immortal Life of Henrietta Lacks is a biographic novel written by Rebecca Skloot that traces the life and history of the woman whom the original cells were cultured from, 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 the culture of their mother’s cells. In the process of telling Henrietta’s story, Skloot reveals a long history of the exploitation and neglect of African American populations in the name of medical research in the United States, raising important ethical questions regarding the consent and compensation of research subjects. In this article, we will research and analyze The Immortal Life of Henrietta Lacks – ethical and racial issues.

One of the main issues that the story of Henrietta Lacks raises is that of patient autonomy, particularly with regard to medical research. The lives of Henrietta and her children are continuously 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 more samples were taken from her tumor in later surgeries. Eventually, after the cells began to grow indefinitely, the cell line was shared by many of Gey’s colleagues. Gey felt that the cell line was his to share because his lab had cultured the cells, even though the Lackses were completely unaware. In Gey’s mind, Henrietta’s cells were completely separated from her as a person. In addition, Henrietta was devastated after she realized that she had become infertile as a result of her radiation treatments, although she was not 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 treatment, and that they did not understand what it meant when her cells were cultured after they found out later on. The story emphasizes the importance of informed consent as part of patient autonomy. The pattern of conducting procedures on the Lackses without informed consent continues years after Henrietta’s death when researchers are sent to draw blood from her children in order to experiment with genome mapping. The children agree to the blood draw because they mistakenly believed that it was a test to see if they carried the same illness as Henrietta. The fact that the researchers did not clearly specify the purpose of the blood draw is indicative of the fact that they viewed the Lackses as mere research subjects. The issue continues further when the researchers publish the results and reveal the identities 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 the rights of an individual to their body both before and after samples are taken. This case is unique because the lack of informed consent was discovered years after the cells were cultured and used in the development of multiple technological innovations and also because the original patient was no longer alive to voice her own opinion on the matter.

Another prominent theme of the book was the consistent lack of access to healthcare that the Lackses experienced over generations as a result of poverty and discrimination. The dark irony of Henrietta’s case is that despite how much she unknowingly contributed to the medical field, she and her family were continuously excluded from it. It is clear that the family did not have access to preventative care, because Henrietta’s cervical mass grew unchecked until it was too late. She also had to travel 20 miles to the nearest hospital, Johns Hopkins, that would treat African Americans during the Jim Crow era. In addition to her cancer, Henrietta also suffered from untreated syphilis and gonorrhea. Her pain was often dismissed by the physicians, who repeatedly underestimated the severity of her condition until the point where her cancer became inoperable and her pain was unmanageable. Henrietta’s children were also deeply affected by poverty and discrimination. As a result of Henrietta’s untreated infections, one of her children, Elsie, was developmentally delayed and also had epilepsy that remained untreated until Henrietta was unable to care for her anymore. At this point, Elsie was sent to a facility 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 of the Lackses understandably have an extreme mistrust of physicians 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. In addition, none of the family members have health insurance, and many of them are already in massive financial debt because of prior medical bills. This case is an extreme example of racialized and disparate healthcare outcomes in the United States.

In addition to the discrimination and lack of access that was specific to the Lacks’ experience, Skloot also emphasizes the targeted racist practices that were common in the medical and research fields throughout history. The traumatic and racist experiences that Henrietta and her family encountered were part of a larger institutional structure that consistently targeted minority populations, especially African Americans, for the benefit of medical progress 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 from the Sloan-Kettering Institute, injected multiple people with HeLa cells without informed consent in an attempt to determine whether scientists were at risk for infection when working with them in laboratory conditions. While the research subjects consented to being injected, they were unaware that the cells were from cancerous tissue, so the consent could not be considered informed consent. After preliminary testing, he decided to test the Ohio State prisoner population. Prison populations in the United States are currently and have historically been disproportionately composed of impoverished African Americans. Southam infected hundreds of people with cancerous HeLa cells without telling them that the cells were cancerous. Especially telling was the fact that when asked about his actions, Southam responded that informed consent was unnecessary 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 instead of as people with agency. Especially with regards to the prisoner population, the practice can be seen as akin to treating them as lab rats, considering the power dynamic involved and the lack of information provided. The lack of regard for African Americans in the general community and especially in the prison system results in the dehumanization of the population.

Skloot concludes the book with a final update on Henrietta’s family, which mostly remains in poverty. Two of her children have passed away after having heart attacks and one of her children is in extreme debt after a medical procedure. However, Henrietta’s grandchildren and great-grandchildren are doing relatively well. The ending of the book is bittersweet, much like the story of the HeLa cells, which brought enormous medical innovations despite coming from cancer, discrimination, and poverty.

The takeaway message of the book is that research with human subjects should be approached in an ethical 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 emphasizes the importance of adequate consent and compensation of subjects and donors. This is important for future researchers and physicians to understand in order to strive towards repairing the damage that has been done in the past and in order to rebuild relations and trust with vulnerable populations.

Something that I found particularly interesting was the way that the African American community had created myth-like stories about the racism that they experienced in real life from the medical community. For example, one of Skloot’s informants compares physicians from Johns Hopkins to the “boogeyman” and explains that children were told to be home before nighttime in order to avoid being taken by researchers. Skloot also explains that some of the stories originated from the slave era and that they were perpetuated by slave owners in order to intimidate them. While many physicians enter the medical field in order to fulfill their passion of helping others, the fact that horror stories about medical progress at the expense of poor African Americans have endured centuries of time is highly indicative of the fact that racism and classism have continued to be issued in medicine and research.

For this reason, I would recommend this book to others, especially to those that intend to enter the medical field. Institutionalized discrimination has played a large but behind-the-scenes influence in medicine and research for many years. Trying to reverse the effects of centuries of racism in perpetuating differential health outcomes requires careful and active thought from 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 drives home the experiences of the medically underprivileged. In addition, as medical technology and genetic research continue to progress in contemporary times, there will continue to be moral and philosophical questions regarding the ownership of genetic material. The history of HeLa cells and the story of the woman and family behind them will remain an important example of unethical behavior that should inform the way that future medical and research professionals advocate for their patients and research subjects. 

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