The Immortal Life of Henrietta Lacks was about an African American woman that was a tobacco farmer, who was diagnosed at 30, with cervical cancer in February 1951, and dead by October the same year. She was treated at John Hopkin, in era in which hospital wards were still segregated. As doctors customarily did at the same time, during the treatment- with radium therapy, in which small vials of radio material were sewn to her cervix-without her knowledge and consent, Henrietta’s cancerous tissue was harvested, and headed off to researchers.
In the lab, the researcher discovered that Henrietta’s cells were extraordinarily good at replicating themselves, often aggressively climbing up the sides of test tubes. Because of that property, the ability to regenerate so robustly, the cells dubbed “Hela cells” have been invaluable to medical research as a source of human cells on which to test vaccines (including the polio vaccine) and drugs. Henrietta’s cells are called the “immortal cell line” in that they lived on long after her death. The tragedy is Henrietta was married, and had five children, which the oldest, Elsie was mute and deaf.
She was placed in an institution, where she later died. The other children were raised in poverty by their father, who had a third grade education. No one in the family has received any compensation for Henrietta’s cells. The irony of the story is that Henrietta’s family is too poor to afford health insurance, and so has largely been unable to benefit from medical advances Henrietta’s cells have occasioned, or if they have, only at great cost. No one in the family was even aware that her cells were being used in this way until the 1970’s when they were told by chance.
Scientist had in fact, as is standard ethical practice, tried to sever Henrietta’s family members to ask for more tissue samples. The Lackses never sued anyone, partly because of their suspicion of outsiders, apparently at least one ambulance chaser con artist has been around them, and partly because it’s not clear that anyone, at any point, did anything illegal at the time. There is so much in this story. The intersection of race, class, gender, into perfect storm of powerlessness, because although Skloot was pretty empathetic about giving the benefit of he doubt to scientists, it is unimaginable that this story could be the same has this been some white, wealthy Baltimore women in whom these cells were discovered. The fact that struck me the most was the fact that in a country with a more functional social safety net, universal healthcare, social assistance, half-decent public schools, the disparities between the Lackses situation, and the incredible wealth generated by the medical knowledge it occasioned, wouldn’t be so stark.
They would have actively benefited from this research just like everyone else. I was outraged that the Lackses family had little legal recourse, but the truth is, in complicated qualified cases like this one, the courts make for extremely poor substitutes for social safety nets. In my opinion, there’s no substitute for the knowledge that at the end of the day, if something bad happens to you, you will be, at least materially speaking. Maybe it’s just me being Canadian again.