Last night I went to a talk given by Rebecca Skloot, the author of The Immortal Life of Henrietta Lacks, at the New York Society for Ethical Culture. I’d been hearing about the book on book blogs for quite some time, and TNC covered it awhile back – and all the reviews were glowing. It hasn’t, for whatever reason, gotten much coverage in the feminist and progressive blogosphere.
Here is the simplest version of Henrietta’s story. She was an African American tobacco farmer, who was diagnosed, at 30, with cervical cancer in February 1951, and dead by October that same year. She was treated at Johns Hopkins, in Baltimore, in an era in which hospital wards were still segregated. As doctors customarily did at the time, during her treatment – with radium therapy, in which small vials of radioactive material were sewn to her cervix – without her knowledge and consent, Henrietta’s cancerous tissue was harvested, and handed 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 first “immortal cell line,” in that they lived on long after her death.
That’s the good part. The tragedy is this: Henrietta was married, and had five children, the eldest of which, Elsie, was deaf and mute. After Henrietta died, Elsie was placed into an institution, in the sort of horrific conditions one associates with Hollywood movies, 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 received any compensation for Henrietta’s cells. The horrific irony is that in general, the Lacks 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 1970s, when they were told by chance. Scientists had in fact, as is standard ethical practice, tried to sever Henrietta’s identity from the cells at least publicly – medical students and scientists report being told by professors that the cells had originated with a white woman named Helen Lane. Nonetheless, scientists did, apparently, occasionally seek out Henrietta’s family members to ask for more tissue samples. Because of the family’s general circumstances and lack of education it was often quite difficult for them to understand why it was that these samples were wanted and they grew suspicious of scientists and journalists who visited them over the years, wanting something from them. Some family members, apparently, even had difficulty understanding the concept of a cell, and what kind of information might be contained within them. Skloot said that for example, Henrietta’s younger daughter, Deborah, only 2 when her mother died, had once asked researchers if, by studying Henrietta’s cells, they could tell what her mother’s favourite colour was, or whether or not she liked to dance.
The Lackses have 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’s so much to get into in this story. The intersection of race, class, and gender, into a perfect storm of powerlessness – because, although Skloot was pretty emphatic about giving the benefit of the doubt to scientists, it is unimaginable that this story could be the same had this been some white, wealthy Baltimore woman in whom these cells were discovered. The fact that legally, no one “owns” their own medical waste – and that in the end very few people, and apparently not even the Lackses, want this research to stop. The need for consent to be truly informed – in that fine print shouldn’t be the end-all and be-all of the obligation of scientists to make sure that people understand what is happening to them. (Skloot noted that every person she’s ever talked to who had their cells harvested without their consent, and later tried to take legal action, have always said, “If they had just asked me, I would have said yes.”)
But what struck me most was the fact that in a country with a more functional social safety net – universal health care, social assistance, half-decent public schools – the disparities between the Lackses’s 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. Everyone at the talk last night seemed outraged that the Lacks 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. Litigation is long, and expensive, and often fruitless, and in the end, even the injection of cash one gets at the end is small comfort for the years of waiting. In my opinion, anyway, 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, okay. But maybe that’s just me being Canadian again.
Anyway, buy the book. I’m going to, this afternoon. Part of the proceeds go to a foundation established by Skloot for the Lackses, so don’t be shy about buying it in hardcover.