gmcgregor
Written on Mar 21, 2018
In 1951, a 30 year-old black woman, a mother of five, walked into Johns Hopkins and was diagnosed with cervical cancer. She underwent treatment, but didn't survive very long. While she was being treated, a sample was taken of her cervical cells, both the cancerous and non-cancerous ones. Each was cultivated, but while the latter cells died, the former grew and wouldn't stop growing. As was the custom at the time in that lab, the cell line was named after the person it came from: the first two letters of the first name, then the first two of the last. Henrietta Lacks. HeLa. One of the most widely used cell lines in the world for decades, but the person behind it was lost and some people even thought the original donor's name was Helen Lane...until Rebecca Skloot published The Immortal Life of Henrietta Lacks, which told the story of the woman and her descendants for the first time.
Well, "donor" might not have been the correct word to use up there, because Henrietta didn't knowingly "donate" anything. Instead, the doctors working on her took the samples without bothering to ask her permission, which was standard practice at the time. And the ethics of this sort of thing, the evolution of informed consent, is a key part of the book, which Skloot weaves around the story of the Lacks family. How fast medical science has grown, and how slow the field's understanding of or willingness to comply with what is right has been in trying to keep up with it. In a world where all you need to get a basic understanding of your genetic picture is $100, to spit in a tube, and 6-8 weeks for processing, what kind of protections should be around that data? We likely still don't know the full implications of something like that being hacked or leaked.
This book has become a science classic already, and it's easy to see why: Skloot is a talented storyteller, and for most of the book's run does an admirable job of keeping her three pieces (Henrietta herself, the HeLa cells/medical ethics, and the story of the Lacks children) in balance. She does great work in digging up what little information there is about Henrietta's short life, mostly through the connections she managed to build with the children Lacks left behind. I've got some grounding in science research from my days as a psychology student, and I know about some of the more egregious bullshit doctors used to get up to (especially with the poor and people of color), but even I was shocked at how lax regulations on human research used to be and how deeply the focus was on getting data at any costs. I was chilled by the story she recounts of a researcher, who the Lacks children believe was untruthful with them when she encountered them years before the book was written, expressing her longing to be able to get material (i.e. blood) from those same people to perform tests.
The reason I haven't rated this more highly, then, is that it starts to drag at the end, becoming more a story about how the story was reported, which tends to bother me unless it's in small doses. It's clearly rooted in a deep, real fondness for Deborah Lacks, one of her primary sources, and a desire to do justice to her story too...but for me, it didn't have the power of the larger narrative and didn't quite work. That being said, this is a story everyone should read and I definitely recommend it to a wide audience.
Well, "donor" might not have been the correct word to use up there, because Henrietta didn't knowingly "donate" anything. Instead, the doctors working on her took the samples without bothering to ask her permission, which was standard practice at the time. And the ethics of this sort of thing, the evolution of informed consent, is a key part of the book, which Skloot weaves around the story of the Lacks family. How fast medical science has grown, and how slow the field's understanding of or willingness to comply with what is right has been in trying to keep up with it. In a world where all you need to get a basic understanding of your genetic picture is $100, to spit in a tube, and 6-8 weeks for processing, what kind of protections should be around that data? We likely still don't know the full implications of something like that being hacked or leaked.
This book has become a science classic already, and it's easy to see why: Skloot is a talented storyteller, and for most of the book's run does an admirable job of keeping her three pieces (Henrietta herself, the HeLa cells/medical ethics, and the story of the Lacks children) in balance. She does great work in digging up what little information there is about Henrietta's short life, mostly through the connections she managed to build with the children Lacks left behind. I've got some grounding in science research from my days as a psychology student, and I know about some of the more egregious bullshit doctors used to get up to (especially with the poor and people of color), but even I was shocked at how lax regulations on human research used to be and how deeply the focus was on getting data at any costs. I was chilled by the story she recounts of a researcher, who the Lacks children believe was untruthful with them when she encountered them years before the book was written, expressing her longing to be able to get material (i.e. blood) from those same people to perform tests.
The reason I haven't rated this more highly, then, is that it starts to drag at the end, becoming more a story about how the story was reported, which tends to bother me unless it's in small doses. It's clearly rooted in a deep, real fondness for Deborah Lacks, one of her primary sources, and a desire to do justice to her story too...but for me, it didn't have the power of the larger narrative and didn't quite work. That being said, this is a story everyone should read and I definitely recommend it to a wide audience.
