In the final part of The Immortal Life of Henrietta Lacks, Rebecca Skloot details the Lacks’ revelation that their mother’s cells had been harvested without consent. This comes several decades after the initial procedure and as a complete surprise and shock to the family. The Lacks, who largely remained uneducated, were confused as to how the cells lived years after their mother’s death. In pursuit of answers, we follow Deborah on her journey to piece together her mother’s history with help from the author herself. Together, they learn about the paternalistic medical culture of the 50s that Henrietta entered, the explicit racism that compounded many of her problems, the multibillion-dollar industry that arose from HeLa cells, and, more personally to the family, the fate of the eldest sister, Elsie.
Throughout this section, it is clear that the family lives in the irony of their mother’s “contribution” to healthcare and their socioeconomic status. This is perhaps best epitomized when Deborah says on page 256 that “I would like some health insurance so I don’t have to pay all that money every month for drugs my mother cells probably helped make.” This family has experienced one of the most well-documented instances of medical exploitation, and yet the lack of compensation for this injustice has trapped them in a cycle of poverty wherein they cannot afford healthcare. In essence, Deborah, Henrietta, and the entire Lacks’ family are victimized by the same system decades apart.
However, it is noteworthy that the only professionals to ever acknowledge the injustice of this victimization are the international researchers, such as Christoph Lengauer. The Australian researcher opened his lab to the family and was the first professional to take the time to explain HeLa to the Lacks. Despite being a white scientist at Johns Hopkins, the very group that had started the Lacks’ plight, he was able to say “Hopkins pretty much screwed up”, with no qualms. To me, this indicates the problem lays within the culture of American medical practice and research. There is something fundamentally paternalistic in how we train our scientists and it encourages the separation of a patient from their treatment. Whether this stems from elitism, racism, sexism, or other bias is up for debate, but these were all undeniably evident throughout the novel and definitely contributed to the tough situations faced by the Lacks. As these seem to be fundamental qualities of our culture, I feel we are destined to live in a cycle of paternalism where the most vulnerable populations receive the worst health outcomes. For me, the only solution would be to adopt a more socialized version of healthcare. This would allow a family like the Lacks to break the cycle of poor health without weighing their financial limitations. However, given the current American political climate, I doubt this would ever happen. Thus, I wonder if anyone has a proposal that could circumvent such a measure while achieving the same goals?
Raymond does a great job keenly reading and observing the final part of The Immortal Life of Henrietta Lacks. She argues that throughout this ending section, the Lacks family struggling with their financial and physical health is a satire. She picks out a fantastic quote by Deborah to support her argument with pure evidence; in which the quote is Deborah asking for health insurance to pay less for month to month drugs as her mother probably helped create the drug itself. While reading, it was clear to me the suffering the Lacks family has experienced is unjust; so, I could not agree more with her argument. Raymond then expands to address that the Lacks family is trapped in this cycle of healthcare decades apart from each other. This was a key idea that I missed while reading and is crucial to address in our society today, as injustices due to poverty are still prevalent today. Raymond moves on to speak on the fact that the only professional to address and/or acknowledge the injustice of Henrietta was Christoph Lengauer, a white international researcher at Johns Hopkins. She then observes that this is a key situation that directly relates to the paternalistic way in which we train scientists and encourages separation of a patient and their treatment. In my opinion, this may seem like a stretch as Henrietta’s identity was not related to HeLa for years to come, leaving out the time for the injustices to be said and or debated by any doctor/researcher. Yet, I do not disagree in which it is odd and unjust that only one researcher, not doctor, was noted on saying Johns Hopkins messed up. I also disagree with Raymond stating the most vulnerable populations receive the worst health outcomes due to this “cycle of paternalism” taught to doctors. The novel, and story, of Henrietta Lacks made this clear and concise to the readers. To explore the question posed at the end of her post, socialized healthcare may be extremely difficult given economic theory. Yet, is reasonable given bioethical theory.
J. Raymond’s summary and analysis of the final third of The Immortal Life of Henrietta Lacks is not only spot on but also thought-provoking. In the summary, J reminds us of the journey embarked on by Deborah Lacks (Henrietta’s daughter) and the author of the book, Rebecca Skloot, and how they worked to gain more information about the various impacts of Henrietta’s cells on modern medicine, the rules are broken by the horrible John’s Hopkins team that operated and then did research on Henrietta’s cells, and also spent time sorting through emotions on how terribly the Lack’s family had been treated in contrast to how amazing the cells had been for science.
Furthermore, J dives into the deeper social issues we face in society, that are pounded into the consciousness of readers throughout the book-racism, elitism, paternalism, and sexism. In my opinion, no human could finish reading this book and not feel like any of these “ism” were in place unless they truly had blemishes in their heart/beliefs. Therefore, although people who are as terrible as Dr. Gey and others in the book, I enjoyed J’s attempt to conjure up a way to reduce the paternalistic acts of said people on those who struggle with healthcare the most. Sadly, as mentioned by J, this type of change will likely not occur soon. That said, I have my own question. Although The Immortal Life of Henrietta Lacks is being taught in many medical schools across the country, how can institutions do a better job of screening doctors who display similar traits to Dr. Gey and others? How can we significantly reduce the racism and paternalism present in the medical community? When will thought-provoking bioethics classes like this be a staple in every medical school and residency?