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?