The pursuit of evidence is the most pressing moral imperative of our time

Galileos Middle Finger book coverGalileo’s Middle Finger: Heretics, Activists and the Search for Justice in Science
by Alice Dreger

This is a troubling book in many ways. It made me punch the air triumphantly and it made me angry. I was impressed by Dreger and I was annoyed by her. I think it’s an important part of the story of how science and activism interact, but it’s not the whole story.

Dreger is a science historian who got involved in intersex activism after studying the history of how intersex conditions were treated medically. She was able to occupy a middle ground between intersex people and medics, and use that position to investigate the current situation (in the 1990s and 2000s) and campaign for evidence-based change to treatment.

“Science and social justice require each other to be healthy, and both are critically important to human freedom. Without a just system, you cannot be free to do science, including science designed to better understand human identity; without science, and especially scientific understandings of human behaviours, you cannot know how to create a sustainably just system…The pursuit of evidence is probably the most pressing moral imperative of our time [but] we’ve built up a system in which scientists and social justice advocates are fighting in ways that poison the soil on which both depend.”

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I can’t get mad at science

The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks
by Rebecca Skloot

I remember hearing about this book when I first came out and thinking “That sounds interesting” and moving on. It got serious fanfare in the US but I think over here it was a quieter success and now I’ve read it I wonder why it wasn’t a bigger deal here as well, because it’s an amazing book.

I mean, I get it really. It’s an American story by an American author dealing with some specifically American issues – segregation and civil rights, medical care and insurance, education of the poor. But it’s also a universal story. I mean, Henrietta Lacks’ cells are at the heart of biological and medical research all over the world.

“[I’ve wondered] what she’d think about cells from her cervix living on forever – bought, sold, packaged, and shipped by the trillions to laboratories around the world. I’ve tried to imagine how she’d feel knowing that her cells went up in the first space missions…or that they helped with some of the most important advances in medicine…I’m pretty sure that she – like most of us – would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.”
– Rebecca Skloot

I should explain. Henrietta Lacks was a very poor black woman who died of aggressive cervical cancer in 1951, aged just 31. She was being treated at Johns Hopkins Hospital in Baltimore, where a Dr Gey was particularly interested in cervical cancer, as he was studying its two different known forms, so he was taking tissue samples of every cervical tumour he came across. He also happened to be trying to grow human cells in the lab but couldn’t seem to keep any alive, so any tissue samples he collected were also passed to his assistant for that purpose. Lacks’ cancer cells, labelled HeLa after her, didn’t die but instead multiplied. And they kept on multiplying day after day, something which was unprecedented in human tissue.

This was huge news scientifically speaking. Lab-grown human cells gave scientists an intermediary between animal testing and live human subjects. Suddenly they could infect real human cells with diseases and see how they reacted. They could test medicines and biological theories. Specific chromosomes were identified for the first time using HeLa cells. The polio vaccine was developed, as were IVF and chemotherapy. Many huge breakthroughs in science can be traced back to Henrietta Lacks. So it’s strange and jarring to read that she died so poor she didn’t even have a gravestone (until, that is, a year or so after this book was published when Skloot had prompted enough people to remember Lacks that the money was finally raised and a memorial service held). In fact, Henrietta Lacks wasn’t even asked permission for her tissue sample to be used in research. And her family didn’t know about HeLa cells until two decades after her death, when they found out from a journalist.

“John Hopkin [sic] didn’t give us no information about anything. That was the bad part. Not the sad part, but the bad part.”
– Sonny Lacks

“It’s not fair! She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?”
– Lawrence Lacks

It’s an often sad story, and it would be easy to be judgemental about the money made by pharmaceutical companies from HeLa while many of the Lacks family can’t afford basic healthcare or decent education. But that would be an oversimplification and Skloot is a better writer than that. Dr Gey freely sent samples of HeLa cells to fellow researchers all over the world, so his only profit was his continued career. And there were very few laws surrounding medical ethics in the 1950s; it was common to take human tissues without consent, or perform tests on patients without explaining why.

Skloot combines three different stories here: the life of Henrietta Lacks and her family; the scientific impact of HeLa, including the development of ethics laws and lab procedures; and her own investigations, which lasted more than a decade and had their roots in her biology degree course, in which Henrietta Lacks merited just one sentence in one lecture. Skloot really did have to be dogged in her pursuit of the truth. The Lacks family had not been treated well by previous journalists and took a lot of persuading to co-operate.

“Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.”
– Deborah Lacks

She manages all three strands brilliantly, with wit and insight. I learned a lot about the science of HeLa cells, about medical ethics (and the historical lack of them), about the Lacks family. Skloot depicts it all honestly, warts and all. The Lacks family history is a colourful one that includes slavery, STDs, domestic violence, drugs, prison and many a family feud. And the scientific story, while largely a positive one, also includes some disturbing moments.

This is an important story that needed to be told but Skloot wasn’t the first to try. The difference is that she was the first to do it well. This is a gripping, entertaining read and deserves all praise and success that comes its way. When I did a little further reading on Skloot’s website I discovered that with the profits from this book she set up the Henrietta Lacks Foundation, which provides grants for medical and educational expenses to those in need, particularly members of the Lacks family. I think I have developed a small crush on her.

Published 2010 by Macmillan.

Source: Borrowed from the library.

Challenges: This counts towards the 2014 Popular-Science Reading Challenge.