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Feb. 17th, 2023 11:51 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
seekingferretThe Immortal Life of Henrietta Lacks by Rebecca Skloot
I dunno, I found it both gripping and kind of underwhelming. It's not particularly deeply interested in the science of HeLa, it's interested in the human story of who Henrietta Lacks is and how her afterlife affected the people who were connected to her- her husband, her children and grandchildren and great-grandchildren, her friends and cousins. In a lot of ways it reminded me of the Felix section of Zadie Smith's NW, Smith's complicated musings about the obligations that literate people have toward those who are not literate to include them in the discourse of the world when it impacts them. This can be a pretty condescending frame and Skloot's struggle between empathy and a sense of superiority toward her subjects made this kind of uncomfortable to read at times.
I also, like... there are many instances in the history of science of medical researchers doing experiments without the clear consent of their subjects that were clearly morally wrong and caused harm, and Skloot details some of them and explains why, as a result of these trespasses, the Lacks family was justified in its anger upon realizing the way HeLa cells were being used, especially because nobody took the trouble to explain the context to the Lackses in a way they could understand. But there are also many unremarked instances in the history of science of medical researchers doing experiments without the clear consent of their subjects that actually weren't any moral problem at all. And you could definitely also understand the HeLa story this way. They took a biopsy from her. They were going to throw it out, but instead they tried an experiment with it. They attempted to anonymize it, and only revealed the actual name of the donor in order to prevent the spread of misinformation. They unambiguously didn't violate any law or medical ethical standard that existed at the time! For some fraction of the book, I grappled with my instinct to say "So what?" Why personalize this at all, it's just a clump of cells? Which is to say I think I have my own struggle between empathy and superiority and maybe it's the fact that I much more easily see Skloot in the mirror rather than Henrietta Lacks or her daugher Deborah Lacks that made this sometimes uncomfortable for me.
The most compelling passages in the book for me are moments when Skloot or one of the scientists she connects the Lackses to explain how HeLa is used and show them something that helps them feel connected to their mother. The moments when the science and the human story get connected. But even there, one gets the sense that these are only momentary connections, destined to fall apart with time and fading memory.
I dunno, I found it both gripping and kind of underwhelming. It's not particularly deeply interested in the science of HeLa, it's interested in the human story of who Henrietta Lacks is and how her afterlife affected the people who were connected to her- her husband, her children and grandchildren and great-grandchildren, her friends and cousins. In a lot of ways it reminded me of the Felix section of Zadie Smith's NW, Smith's complicated musings about the obligations that literate people have toward those who are not literate to include them in the discourse of the world when it impacts them. This can be a pretty condescending frame and Skloot's struggle between empathy and a sense of superiority toward her subjects made this kind of uncomfortable to read at times.
I also, like... there are many instances in the history of science of medical researchers doing experiments without the clear consent of their subjects that were clearly morally wrong and caused harm, and Skloot details some of them and explains why, as a result of these trespasses, the Lacks family was justified in its anger upon realizing the way HeLa cells were being used, especially because nobody took the trouble to explain the context to the Lackses in a way they could understand. But there are also many unremarked instances in the history of science of medical researchers doing experiments without the clear consent of their subjects that actually weren't any moral problem at all. And you could definitely also understand the HeLa story this way. They took a biopsy from her. They were going to throw it out, but instead they tried an experiment with it. They attempted to anonymize it, and only revealed the actual name of the donor in order to prevent the spread of misinformation. They unambiguously didn't violate any law or medical ethical standard that existed at the time! For some fraction of the book, I grappled with my instinct to say "So what?" Why personalize this at all, it's just a clump of cells? Which is to say I think I have my own struggle between empathy and superiority and maybe it's the fact that I much more easily see Skloot in the mirror rather than Henrietta Lacks or her daugher Deborah Lacks that made this sometimes uncomfortable for me.
The most compelling passages in the book for me are moments when Skloot or one of the scientists she connects the Lackses to explain how HeLa is used and show them something that helps them feel connected to their mother. The moments when the science and the human story get connected. But even there, one gets the sense that these are only momentary connections, destined to fall apart with time and fading memory.