I recently joined a book club, and last week we met virtually to discuss The Immortal Life of Henrietta Lacks by Rebecca Skloot.
The book has been circling my periphery for some time, coming up in recommended reads lists for at least a year. When it came time for me to suggest the next read, I chose this book without really knowing much about the subject. I was vaguely aware that Henrietta Lacks’s cells were instrumental to many scientific and medical advances, and I was aware that the obtaining of the cells was likely done unethically, as was the case for many Black Americans who found themselves under medical scrutiny in the middle of the last century. Since I review research ethics applications on two ethics boards I serve on, and because of the ongoing conversation around Black lives, I thought this would be a good book for us to read and learn from.
In short, the book is fantastic as a piece of writing.
But the story of Henrietta Lacks and her family is heartbreaking. The book paints a vivid portrait of who Henrietta was, and gives intimate glimpses into the life of her decedents. It also presents a comprehensive history of both the rise of research ethics since the end of World War Two and of the many advances made by science thanks to Henrietta’s cells. However, those advances were done with cells acquired neither with proper consent nor compensation. For many years after her early death, Henrietta’s name became lost to obscurity outside of her family, but everyone in the cellular biology community knew her cells because of how abundant they were. In a tragic twist, the very medical advances that gave way to better understandings of radiation, viruses, and vaccines, were often not available to the impoverished Lacks family. While the Lacks’s remained stuck in poverty, others profited.
I highly recommend everyone read this book.
As we discussed the book last week, I realized that this was an example of why it’s important to enlarge the domain of one’s ignorance. Learning about history shouldn’t be an exercise in theory; often we forget that history is presented as an abstraction away from the stories of individual people. If we forget about their individual lives, we can sometimes take the wrong lessons from history. As the saying goes, those who don’t learn from history are doomed to repeat it. In this case, we continue to exploit the voiceless, and profit on the backs of the disenfranchised – those who don’t have the power to speak back.
Reading books like this gives me a greater context for history, and it helps me understand the lived-history of people. I review research projects to understand the ethical consequences of our search for knowledge. If I lack a historical context – the history of how research was and is carried out – then I run the risk of perpetuating the same injustices on the people of today that the research is meant to help.
Research is supposed to be dispassionate, but we must understand and situate it within its proper historical context.
In an allusion to Picard, I close with this: constant vigilance is the price we must pay for progress.
Stay Awesome,
Ryan
A Paramedic's Notebook 