Saturday, 12 March 2011

'When people hear about my mother cells they always say, "Oh y'all could be rich! ... Truth be told, I can't get mad at science, because it help people live ... 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.'
Quote from Deborah Lacks, younger daughter of Henrietta Lacks (Henrietta photographed here with her husband c 1945).

I scraped through 'O'-level biology and that was the end of my scientific education. At the age of 15.
So I'm not the most likely person to be engrossed by a book about cancer cells.
However, The Immortal Life of Henrietta Lacks is not only a brilliant work of scientific journalism by Rebecca Skloot, but also a heartbreaking story of a family's anguish as they struggle to grasp what science has done to their mother. This is the story of a real woman whose cancer cells became a multi-million dollar industry ...
Henrietta Lacks was born into a poor, black family of tobacco farmers in Virginia, became a mother at 14, and had five young children when she was diagnosed with cervical cancer in 1951. She was treated (in a colour-segregated ward) with a rudimentary radium treatment but her cancer grew at a terrifying rate and she died in agony eight months later, aged only 31.
But before Henrietta died, a doctor took a sliver of tissue from her cancer. Tissue culture was in its infancy and nobody as yet had found a way of successfully growing human cells. But Henrietta's cancer cells multiplied, doubling their numbers every 24 hours. Even before she died, HeLa cells were being air-mailed to research scientists around the world.
When they opened Henrietta up - and the autopsy revealed her organs to be so covered in small tumours that it looked as if someone had filled up her body with pearls - a young woman technician happened to look at her feet and the chipped red varnish on Henrietta's toes. And thought, 'Oh jeez, she's a real person.'
Those HeLa cells proved to be one of the most important tools in 20th century medical research, for developing polio vaccine and chemotherapy, IVF, cloning, gene mapping, to study viruses like AIDS and ebola ... they even launched them into space. It has been estimated that all the HeLa cells ever grown would wrap three times around the earth. But it wasn't until the 1970s, when scientists wanted to carry out tests on Henrietta's children, that her family got any hint of all of this.
It didn't occur to anybody to explain to them. What little they grasped sounded terrifying, the stuff of science fiction. Especially to Deborah, Henrietta's younger daughter who wasn't quite two-years-old when her mother died. She was traumatised, worrying that she might bump into her mother's clone in the street; terrified that Henrietta was being tortured by these scientific experiments. She broke down when she came across a book describing her mother's autopsy in graphic detail ... when none of the family had even seen her medical records, let alone given permission for their release.
When Rebecca Skloot telephoned Deborah in 1999, she was just another white person wanting to know about her mother ...

Deborah died two years ago, just before this book was published. For all the medical advances driven by their mother's cells, the Lacks family couldn't afford health insurance.
Along the way she'd discovered what happened to her older sister Elsie, a beautiful, damaged child who had been placed in the State Hospital for the Negro Insane. Elsie's story would break your heart.

My father worked in a famous cancer research institute. As a small child, I remember sometimes going into work with him on Saturday mornings. I'm wondering now if there were HeLa cells in some of those petri dishes ... there must have been ... and if it ever crossed my father's mind that HeLa was a real person, only a few years older than himself, a mother of five children?
I can't ask him. He died many years ago. I wish he could have read this book.

9 comments:

bookssnob said...

Well now you've said how good this is Mary I have to read it. It sounds heartbreaking and fascinating. Though I must say, I think I would be rather glad to think that my mother had helped so many people...even if it was done in an underhanded way.

mary said...

It was fascinating, Rachel. And, of course, they were very proud that their mother had helped so many people. When you think of the profits made by these bio-tech companies, though, you'd think somebody might have had the decency to stump up for health insurance for a family struggling to pay their own medical bills.

rachel said...

Science without heart..... thank goodness for that chipped red nail polish on her toes to remind at least one person that a real woman had lived and died.

SmitoniusAndSonata said...

Scientists can have tunnel vision at the best of times .
It would be wonderful if she could be awarded a posthumous Nobel prize for her magnificent contribution to medical research .

mary said...

Well, maybe a statue, S&S - but she only got a gravestone last year, that's 60 years after her death.
http://scienceblogs.com/culturedish/2010/05/a_historic_day_henrietta_lacks.php

Helen said...

Hello Mary, thank you for commenting on my first blog, I've come over to visit you.

It sounds a harrowing if interesting book. The irony of the Lacks family being unable to afford health insurance when their mother's cells had helped so many is striking, even if I can't imagine that in the early 1950s the idea of compensating people in any way for what was presumably regarded as a specimen entered anyone's heads.

At first I thought it was all the more shocking because it was the medical establishment which was involved - few would characterise drug corporations as caring but somehow I'd have expected better of the individual doctors and scientists. Then again, don't doctors generally desensitise themselves as a way of coping with their work - the technician seeing the red toenails perhaps being a case in point?

Oops, less of a visit and more of a ramble, sorry. Off to look around the rest of your blog now.

Best wishes, Helen

mary said...

Thanks for stopping by, Helen. And feel free to ramble! No, you're right, compensation wouldn't have occurred to anyone in 1950s. And I don't really think that financial compensation is desirable; but the book does leave you reeling at the appalling unfairness of American healthcare.

lifeonthecutoff said...

I have read other reviews on this book, but, none as compelling and passionate as yours. Thank you. The book discussion group I am in has this scheduled for next fall, but, I don't know that I can wait that long.

mary said...

Thank you, Lifeonthecutoff, I'm glad you enjoyed it. I was meaning to choose this for our book group, next time it's my turn, but I couldn't wait either! There's certainly lots to discuss in it.