Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus – and at the very same time – that state officials were conducting the infamous Tuskegee syphilis studies. [p. 97]
I've owned this book for a decade, and I wish I had read it sooner. It's the story of a Black woman in 1950s America, who died of cervical cancer, and whose cells (or rather whose cancer's cells) were taken and used for research. It's not clear what level of consent, if any, she gave for this. The HeLa cells grew very rapidly and, unlike other cultured cells, did not die: this made them ideal for experimental purposes. The polio vaccine was developed using HeLa cells, and HeLa cells have been sent into space, subjected to radiation, and used for medical and pharmaceutical research.
Lacks' family knew nothing of this until the mid-Seventies.
Skloot worked with the Lacks family, especially Henrietta's daughter Deborah, to explore how Henrietta Lacks' cells had achieved this semi-life of their own. It's a damning depiction of bioethical mispractice, as well as a story of systemic racism. Skloot treats the Lacks family with sympathy and sensitivity, and helps them to understand the science of the HeLa strain. They're mostly only educated to a basic level, and they are very religious. (One of the family theorises that HeLa cells are the 'spiritual body' of Henrietta Lacks.) And they are angry: "...if our mother cells done so much for medicine, how come her family can’t afford to see no doctors?" [p. 10]
This was immensely readable, with clear explanations of the science and vignettes of Lacks family life. I was a little uncomfortable about the repeated reference to 'Henrietta's cells': they were cancer cells, and their DNA is not the same as hers. But this is a world where a dead woman's cells have birthed a billion-dollar industry, and I think it's important to remember where those cells came from.
[The Marvel character Hela:] part dead and part alive, with “immeasurable” intelligence, “superhuman” strength, “godlike” stamina and durability, and five hundred pounds of solid muscle. She’s responsible for plagues, sickness, and catastrophes; she’s immune to fire, radiation, toxins, corrosives, disease, and aging. She can also levitate and control people’s minds...When Deborah found pages describing Hela the Marvel character, she thought they were describing her mother, since each of Hela’s traits in some way matched what Deborah had heard about her mother’s cells. But it turned out the sci-fi Hela was inspired by the ancient Norse goddess of death, who lives trapped in a land between hell and the living. Deborah figured that goddess was based on her mother too. [p. 254]