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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?

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