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Sunday, June 9, 2013

Guest Blog by Danielle Budlong

Part Two of The Immortal Life of Henrietta Lacks, “Death,” is arguably the most historically significant and fascinating section of the book [Rebecca Skloot, The Immortal Life of Henrietta Lacks (New York, Random House Inc., 2011): 89-176.]. It begins with the end of her life, but the beginning of her immortality. Serendipitously, Dr. Lawrence Wharton Jr., Henrietta's surgeon at Johns Hopkins where she was treated for cervical cancer in 1951, had collected a tissue sample from her tumor [Skloot, 31,33]. Dr. George Gey's assistant in the tissue culture lab soon discovered that Henrietta's cancer cells did not die like every other human sample thus far, but reproduced prolifically [Skloot, 40-41]. This would begin the journey of her cells of an epic proportion, a journey that would raise serious ethical questions, conjure metaphysical fears, and bring about more scientific discoveries than anyone could have imagined.
    In the absence of the regulation and oversight that the medical research community has today, the doctors that obtained Henrietta's cells, HeLa, had virtually free rein. They were bought, sold, given away, injected into patients, often without their consent. African Americans, Jews, and prisoners were used as test subjects, more often than not without their consent or with minimal notification of the dangers involved in the particular study [Skloot, 128-130,167,]. Researchers fused mouse cells with HeLa cells, not for nefarious reasons, but panicking the public, to whom the media fed images of half-human, half-animals  [Skloot, 142-143].
    However, research flourished, while Henrietta's family did not. Microbiological Associates used HeLa to start the first large-scale cell distribution center, spurring a multibillion-dollar industry [Skloot, 100-101]. Meanwhile, Henrietta's children had to be distributed to family members, where they were abused and in poverty. The grown Lacks children have intermittent insurance, major health problems, and still live in poverty [Skloot, 163]. However, through all of this activity around HeLa, researchers accomplished great things. They realized the need to standardization in cell culture to efficient and repeatable research. The cells were used in the research that resulted in the polio vaccine [Skloot, 96-99]. The cells were instrumental to the process of gene mapping and have contributed to the development of chemotherapy drugs [Skloot 139,142].
    Henrietta's family was not aware that any of this was going on. Due to tradition, superstition, and lack of information, they related to the world in metaphysical ways. They used fears of the supernatural to help explain the events that they did not understand. This was partly due to the fact that the medical community that was working with HeLa cells did not bother to learn about the women from whom the cells came, let alone consider the family. When Henrietta's children were little, they had to stay away from Johns Hopkins for fear that “Hopkins might get us,” and this fear was probably in part based in reality [Skloot, 165-167]. Henrietta's cousin tells the story of Henrietta's funeral service, when, as they were covering her coffin with dirt, a violent storm broke out and killed a family member [Skloot, 92]. The family did not understand what happened to Henrietta, so there must have been something supernatural at work. Skloot experienced this firsthand when she visited Henrietta's cousin “Cootie.” He explained that since Henrietta died, but her cells lived, the sickness must have been the result of either voodoo or the work of the doctors. He described seeing an enormous, headless, tailless hog, dragging huge chains, getting ready to charge at him one night, but luckily the apparition was scared by a car and ran off into the family cemetery [Skloot, 81-82].
    The underlying question Skloot seems to be asking is, after all of the scientific breakthroughs that came from the studies of HeLa, was it worth it the ethical transgressions? The medical community would likely answer in the affirmative, but may have a more difficult time answering the question, does her family deserve a part of it? They took Henrietta's cells without consent, and even though that may have been common practice at the time, she still deserves to be recognized and honored. Providing her heirs lifetime full medical coverage seems a small price to pay for what they reaped from the use of her body....But who should pay?

Wednesday, June 5, 2013

Guest Post by Sarah Murphy

Medical Advancement versus Cultural Beliefs

The LIFE of Henrietta Lacks
            To be moved, conflicted and evermore curious you only need to start reading Rebecca Skloot’s The Immortal Life of Henrietta Lacks [Rebecca Skloot, “Life,” The Immortal Life of Henrietta Lacks, (New York: Crown Publishers, 2010)]. The first part of her book, entitled “Life,” makes you question the development of the modern medical field, and draws you into the story of a woman’s life that has greatly been overlooked in the history of medicine. Henrietta’s cancer cells would be found to never die, unlike most human cells; Henrietta Lacks’ cells would become known as HeLa. Skloot intricately ties together a complicated timeline that involves the medical developments leading up to the “discovery” of the HeLa cells, what is known of Henrietta Lacks’s life up until her death in 1951, the beginning of Skloot’s journey to discover the story of Henrietta and her family and trying to put the reader into the culture of the mid-20th century that included racism, sexism and elitism that is difficult for us to comprehend.
            Part One develops as Skloot travels back and forth between her personal journey to discover more about Henrietta Lacks and the series of developments in cell cultures and cancer-fighting technology. She starts with Henrietta’s first exam where she was diagnosed with cancer. Outlining the foreign nature of hospitals to those who grew up outside of the medical culture, like Henrietta, and especially the difficulty of receiving medical care as a poor African American in Baltimore, Maryland. Skloot talks about Henrietta’s life from her childhood up until her diagnosis. To balance the story, Skloot includes a couple of chapters of medical developments and discusses the complex views of the medical field by the public, particularly surrounding cell cultures. The last aspect of Part One revolves around Skloot’s personal journey to get in contact with Henrietta’s family, and her tumultuous start to uncover a family’s history of loss, distrust and manipulation.
            While the story unweaving before the reader brings a whole mix of emotions, one of the main aspects of Skloot’s Part One is the conflict between general population, specifically the rural poor, and the development of the medical field. There was a complete disconnect between the developing medical field and public understanding and acceptance of modern medicine. Henrietta was just one of the many that came to a hospital, but not understanding fully her diagnosis or the treatment implications. While it was common practice for doctors to explain that radiation treatments would most likely make her infertile, Henrietta did not understand until it was too late that the treatment would make it so she could not have another child (Skloot, 46-7). A gap in language and understanding was the likely culprit of this tragic misunderstanding, but the fact the Henrietta also did not grasp the seriousness of her condition, and that it was likely a choice between fertility and life, and she said if she had known she would not have gone through the radiation treatments (Skloot, 47).
            With such a disconnect in understanding and priorities it is not surprising that many people did not want to have biopsies taken to be used for experimentation, but without this practice medical advancement would likely not have occurred at the rate it has. Even though Henrietta’s husband was asked if doctors could take samples of Henrietta’s cells after her death, his lack of full understanding of the implications did not prevent them from taking those samples, and continue using the samples previously taken without Henrietta’s knowledge. While we would like to say that the doctors were purely in the wrong, without Henrietta’s “immortal cells” many of the medical advances that they lead to would not have happened, or at least would have not had happened as early as they did.
            There is an ethical issue that people still struggle with today regarding the line between patient permission and medical advancement. Had Henrietta been more educated and had an explanation about the impacts her cells could have on the world, would she have agreed? Do doctors have the right to disregard cultural beliefs in the name of saving lives? Skloot has only begun to dive into these issues in Part One, but her open-minded pursuit of the truth allows for a controversial issue to be addressed from all sides simultaneously. The level of respect Skloot brings to the varying interpretations and lives involved in the “discovery” of the HeLa cells allows for a productive conversation around a part of history that is often brushed aside and forgotten, but is very much relevant.