Happily ever after?

The Immortal Life of Henrietta Lacks

Paul Andrews 28 July 2010

A different culture: lab ethics used to be looser

I, like countless others, have learned much from these cancerous critters

I write this as a former user. I’ve spent hours sweating over them, scraping them, poking them with a sharp needle, synchronizing them, transfecting them or pulverising them. Witnessing them in greys or green and red, oscillating and quivering, wrenching and dividing, often dying. I’ve pickled a few billion in my time, too: stained them multi-coloured, scrutinized them, photographed them and measured them. They grow fast and incredibly easily. We call them weeds, but HeLa cells have served me well. I, like countless others, have learned much from these cancerous critters.

So last September when I read the email from a graduate assistant working for an unknown US academic by the name of Rebecca Skloot (Google soon revealed her as a blogger too no less), asking for permission to use one of my HeLa cell images in a forthcoming book, I was interested, flattered and intrigued. I “donated” the picture in exchange for a copy of the book, not wanting to take money from the author’s personal pocket – that would be exploitation, the significance of which becomes apparent later.

The Immortal Life of Henrietta Lacks (Crown, Random House) is about the life and death of a woman and the cancer cells she begat unknowingly to the world of science over half a century ago – cells which, in some shape or form, are still growing to this day in labs around the globe. The book seems to have caught the imagination of the public, in a way I would not have predicted. The author and her book have appeared in the media around the planet: watch out for Hello! The HeLa Edition! But the story she tells is so far from the American Dream: it’s one of poverty, of unmarked graves, of an sick underclass with no access to health care, of a lost, forgotten and exploited population. It’s not clear whether this story has a happy ending at all.

I’m sure many people now know the basic story. Henrietta, a vivacious black woman from a tobacco-picking Virginian family, tried to escape terrible poverty by marrying her cousin and moving to Baltimore to have a large family: nothing particularly unusual there. It was 1951, and at a mere 31 years of age, she died in a “coloured” ward in Johns Hopkins Hospital. People did. She died after a protracted illness, from an aggressive and unusual cervical cancer that spread and ultimately consumed her – but not before a biopsy was removed and placed in an experimental cocktail that the scientists hoped would allow the cells to multiply. Most similar attempts using other patients’ samples had failed, but Henrietta’s cells were different. They flourished beyond the wildest expectations of the researchers. So much so that as soon as you could say ‘exploitation’ they were being shipped around the world and profits made. As the press release from Johns Hopkins earlier this year confirms, of course these were different times and the consent law surrounding patient material is now always adhered to.

The book describes the author’s persistent attempts to break through the Lack family’s self-protective barriers, constructed after the family realized, in the 1970s, the extent of HeLa use, after their futile struggle to get recognition. It details not only these battles, but also those the family have had with illness and poverty in the intervening years – a sorry tale indeed. But it isn’t all doom and gloom: the section where the family meets the enthusiastic and honest Christoph Lengauer, a well-known cancer researcher, is encouraging and heart-warming. Clearly HeLa cells were a breakthrough with their unusual propensity for self-reliant growth. They have enabled a range of problems in science to be examined, from the applied (growing viruses for vaccination) to the basic (mechanisms underlying cell division), but maybe their impact on cancer research per se is over-estimated. HeLas are weird cells that have no doubt morphed into myriad new daughters-of-HeLa since first plucked from inside poor Henrietta Lacks. So they have their place in history, but can they really help us understand the complexity of real cancer cell behaviour?

Overall the book is a fascinating and largely entertaining read, despite being something of a crusade to right a perceived great injustice. For me it’s a little too journalistic and, not surprisingly as a British reader, jarringly American in phraseology - but once you have “gotten over” that aspect the author does engage you with her dogged enthusiasm and quite a heavy dose of bravery in trying to turn round the opinions of a broken and embittered extended family. You genuinely feel the passion she has to tell the human-interest story and give due credit to Henrietta’s unknowing contribution to biological research. Skloot perhaps get too close, too intimately attached to the family - in a worrying way she is infected with the weird and wonderful other-worldly superstitions of Henrietta’s daughter Deborah - but her interpretations of the historical descriptions of Henrietta’s life and ultimately her death are at once evocative and quite moving. Like a lot of “creative non-fiction” some details are too heavily laid on, and you don’t know to what extent it paints an accurate picture of the life of the Lacks family in the distant past or even the present.

Skloot herself could be criticized for weaving herself into the tapestry of the story too much, becoming almost a principal character in the drama, but HeLa and Henrietta’s legacy has been her personal obsession for over a decade, so perhaps we cannot blame her. The nine pages of indulgent acknowledgements are revealing. Parenthetically, I couldn’t help being a little miffed by the lack of thanks for the three image contributors – made even worse by a request from the publisher recently to use my image in the press releases associated with the major book tour. But that, on reflection, is beautiful irony. As a former user, now in the other ethical hot-bed of embryonic stem cell research, I wish the Lacks family well. I hope the Henrietta Lack Scholarship Fund, which is due to receive a “portion” of the profits from the book, does some good for the people who need it most.