The Immortal Life of Henrietta Lacks

Rebecca Skloot – The Immortal Life of Henrietta Lacks

This is another book group text, which explains why I picked up and finished a book which would otherwise send me running for the hills, dealing as it does with subjects like cancer (!) and (im)mortality (!!).  I’m glad I persevered, but be warned: this is not an easy read.

(This is a long review, so more after the jump.)

The Henrietta Lacks of the title was a poor black woman inBaltimorewho, in 1951, contracted a virulent form of cancer which swiftly killed her.  Before her death, doctors took a sample of her cancer cells for research.  At the time it was extraordinarily difficult to get cells to survive outside a living body in the lab (or, to use a new term I picked up from the book, to survive in culture), but such a technological breakthrough was necessary for all sorts of testing that could not be carried out on a living human (studying effects of radiation, vaccines, cures for cancer, etc).  It was routine for cells to be taken in this way, and it was just as routine for them to die after a while outside the living body.  Henrietta’s cells – or, as they were labelled, these HeLa cells – didn’t just survive in culture, they thrived, and went on to become an incredibly important resource in medical and scientific research in the latter half of the twentieth century (five of the last 10 Nobel Prizes for Medicine involved HeLa cells, for a start).

This, however, is only half the story.  Henrietta’s cells were removed without the full understanding or consent of her family, who only learnt many years later, after the cells’ predominance in the scientific world had been thoroughly and seemingly irrevocably established, that Henrietta’s cells were still alive.  Skloot skilfully interweaves many plot strands throughout the book: Henrietta’s own story in the 50s; the Lacks family history from the 50s to the present day; Skloot’s own involvement with the Lacks family during the past ten years; and the scientific history of the study of HeLa cells from the 50s to the present day.  But I suspect it is the current Lackses, and their attempt to come to terms with Henrietta’s legacy, with whom she is most invested – particularly with Henrietta’s daughter Deborah, for whom the task of finding out about her mother became a personal crusade (and who becomes as important a figure in this story as her mother as a result of this determination).  This is at the very least unsurprising: this book has been ten years in the writing and, to all appearances, it seems Skloot became an honorary Lacks family member in that time, in the unique position of being an outsider who was eventually trusted by them.  Their coming to terms with the HeLa cells is largely down to Skloot’s determination to tell Henrietta’s story, to research it and to keep them informed of all her discoveries.

Again and again in this book, I was reminded of the old saw of “if you think education is expensive, try ignorance”.  Because a lack of education seems to be the most devastating of all the problems which beset Henrietta’s children – though they have plenty to deal with, being, also, victims of poverty and a constant background racism (and, in one daughter’s case, debilitating sexual abuse, to which her father turned a blind eye).  This lack of education particularly victimises Deborah, who suffered profound anguish – the kind that raised welts on her skin, produced a series of panic attacks and nearly precipitated a stroke – when she learnt that her mother’s cells had been kept alive and subjected to all sorts of treatments.  Deborah, not understanding the distinction between a sample of her mother’s cells and her mother, seems to have believed that Henrietta herself had been kept alive and had been subjected to treatments such as being blasted with radiation.  But Deborah is by no means alone amongst her milieu in this lack of scientific education – and it must be said that she shows laudable initiative in enrolling herself in classes and ploughing through textbooks, dictionary to one side, in order to better her understanding.  No-one in the Lacks family of Deborah’s generation really seems to know what Henrietta’s cells being alive means.  This produces some fascinating moments in the book, particularly with some really interesting explanations from the family themselves to account for the cells’ significance (they believe that Henrietta’s spirit is perpetuated in the cells, and behaves in accordance with that spirit) – but why don’t people in the late-twentieth and twenty-first centuries in America not know, even in an extremely basic sense, what a cell is, and whether it is sensate and can feel pain?  Shouldn’t Americans, regardless of background, have that sort of education?

This is an exceptionally uncompromising book.  It opens with an almost intolerable description of the cancer which ravaged Henrietta’s body, and goes on to catalogue abuses of the most revolting kind – not only the sexual abuse I alluded to above of one child, but physical abuse of another child by a step-parent and the very likely institutional abuse of yet another young child with learning difficulties.  There is also, too, the extremely upsetting later career of one of Henrietta’s children who went on to commit murder, which is described in detail.  Skloot doesn’t pull her punches with any of these topics, and I was frequently gasping aloud at each new ghastly development.

This is not to say that it is a book entirely without humour or hope.  Particularly in the latter half of the book, I found the present-day story enormously enlivened by Henrietta’s great-grandchildren.  These are kids who are not haunted by the troubles which so afflicted Henrietta’s own children and they seem to have vastly more chances in their lives than the people of Deborah’s generation.  It is palpable the affection Skloot has for them, particularly Deborah’s grandchildren Davon and Alfred, who burst off the page as cheeky, lovely kids.  And as for humour – just at the point where it seems things can’t get any worse, where you’ve had all the pages and pages of abuse and institutional mistreatment of the family, you are introduced to Dr Sir Lord Keenan Kester Cofield [sic], a figure you could not include in realist fiction for being too absurdly unbelievable.  He is worth the price of admission alone.

I have some questions over certain stylistic choices, particularly in Skloot’s decision to render the speech of Deborah and other members of the Lacks family in a straight transcription of their idiolect.  This has the benefit of making their voices jump off the page unmediated by a normative copy-editing hand, but it also constantly reinforces their poverty, their lack of education, their blackness in a way that had me fearing that they were being stereotyped at times.  There is also the issue of Skloot putting words into Henrietta’s mouth or mind in the chapters which deal with her life.  From her prefatory note on her methodology when giving Henrietta speech: “dialogue is either deduced from the written record or quoted verbatim as it was recounted to me in an interview.  Whenever possible I conducted multiple interviews with multiple sources to ensure accuracy” (xii).  I question this methodology: her interviewees in other parts of the book often disagree, and they are all recalling a period more than half a century ago.  And simply put, I am not convinced some of the dialogue given to Henrietta can have been reported in any of these ways.  I am not questioning Skloot’s integrity at all, but I do think a certain element of fictionalising the facts, or at the very least imaginative filling in of the gaps, in order to make the story readable and compelling has taken place, and that it has not been owned up to or significantly enough flagged.

I was under the impression that this would be a pop-science book, and I would have liked more science, personally.  I was totally invested in the importance of Henrietta to her family, and the devastation wrought on them by her absence.  It was a great deal less clear to me just how important her cells had been to science.  Skloot tells the reader many times that they were, but I would like to have been shown their importance a bit more, seen into the processes by which they were used, and the like.  I was the only reader at my book group who had this niggle*, which made me suspect that I was being over-critical of an otherwise extremely successfully realised book – it wasn’t, after all, setting out to be a pop-science book and to fault it for not fulfilling this function wasn’t fair.  Thinking about it on my way home, though, I decided that I stuck by this quibble: without a really objective understanding of the cells’ importance, it was hard to see whether the family’s, and particularly Deborah’s, near megalomaniacal focus on the legacy of their mother’s cells had any basis in reality, or whether there was any real grounding for why a museum should exist to the memory of Henrietta (this, in particular, was totally unknowable to me: were we meant to be smiling wryly over these people’s short-sightedness, or to agree with them that this was a laudable aim?).

Skloot is, my questions over her quoting practice aside, an extremely able writer.  This is a book which could easily have been overturned by so very many competing interests, but she holds to the middle line with admirable poise.  This is nowhere better illustrated than in her final chapter, which steps back from the Lackses to examine some of the wider questions about scientific ethics which their story has thrown up, and to run down where we currently stand on such issues legally if not ethically.  Given how close she has come to the Lackses, it’s inspiring that she hasn’t lost objectivity in these discussions, and gives a very balanced case for each side (one being that it is any human’s duty to add to the sum of knowledge of the world and remuneration doesn’t enter into it, the other being that people should be remunerated for their contributions to science, especially when the researchers and engineers get rewarded for their work on those contributions).  Having read it, I couldn’t decide where I stood on these issues, but that is no failing of Skloot’s book: rather, I consider it quite a selling point, proof that her personal allegiances have not clouded her judgment nor made her writing partisan in either direction.

*After a subsequent conversation about reading habits, it also emerged that I was the only one who regularly sought out non-fiction (admittedly, almost always popular non-fiction, enjoyable reads rather than worthy but dull), the rest seeming to stick entirely to fiction – I thought this a curious point, as everyone else also seemed totally satisfied with just the human drama of the Lackses, and I got some distinctly funny looks from a couple of the other members for wanting more science.