What’s left of Henrietta Lacks?

Anne Enright

I don’t know where I heard of her first: a woman whose cells are bred in culture dishes in labs all over the world; a woman whose cells were so prolific that there is more of her now, in terms of biomass, then there ever was when she was alive.

It seems to me that she is one of the saints who multiplied in reliquaries after their death, to produce, as Ian Paisley’s website reminds us (in an essay called ‘The Errors of Rome’), the many prepuces of the infant Jesus, and the variously coloured hair of His madly trichogenous mother. Perhaps, in these days of cloning, or in future days of cloning, we will look to the evangelical Protestants and say that they were right all along: no miracles please, scientific or otherwise, no icons, and a Just Say No approach to reproduction.

Is there such a thing as an unconscious saint – a saint who didn’t know that she was in some way chosen, or even holy? I would like to put this woman and her cells in a story, but what kind of story would it be? What kind of epiphany would grace her ordinary afternoons?

My-sister-the-doctor says that what I heard was a reference to the HeLa cell line – a popular choice with medical researchers. They are, disgustingly enough, the cells of a woman’s cancer. What is the difference between a woman’s own cells and the cells of her cancer? They are normal body cells that have suffered a genetic alteration, that is all. The question is moot: the closer you get to the body, the harder it is to see. On a cellular level, we are each a community, or several communities, and the relationships are not always clear: some cells ‘commit suicide’, for example, but the question of intention must be a false one. Under the microscope, the question of ‘self’ is so diffuse and so complicated that it might as well not arise.

This is all unlucky talk. I am pregnant for the first time, the bump just beginning to show. I don’t know what my pregnant self is, either. The pregnant body has been through a lot of law courts but I have never seen it properly discussed or described. I don’t know what I am. Am I twice as nice? Am I twice as alive now as I ever was?

On the Internet, I look up ‘HeLa’ on Yahoo and find, within minutes, that the woman’s name was Henrietta Lacks. So what is she missing, I wonder, what does Henrietta lack? What does she want now? I type her name into AltaVista, and get 52 replies. The first site, ‘The Immortal Cells of Henrietta Lacks’, is illustrated with a photograph of a cell. It looks like a ball of maggots. Is this her? No. It is a duly credited picture of a ‘cultured rat bone marrow cell’, magnified 19,500 times.

According to the anonymous author, the HeLa line was begun when cells were taken from the cervix of a 31-year-old Baltimore woman, for tests. The woman died of cancer eight months later but in the meantime some of the cells found their way to the lab of John and Margaret Gey of Johns Hopkins University. They were trying to find a method of keeping human cells dividing in a culture outside the body and had turned to cancer cells for their ability to divide essentially unchecked. These particular cells, named HeLa for the first two letters of the first and last names of the ‘patient’, proved spectacularly successful. Henrietta’s cells were the first human culture to survive beyond the 50th generation and they are still growing: ‘Although Henrietta is dead her cells live on in research labs around the world! In fact, some biologists believe that HeLa cells are no longer human at all and consider them to be single-celled micro-organisms!’

The exclamation marks are some kind of exhortation – but to what? The webpage goes on to say that HeLa cells grow so aggressively they cause problems by invading other cultures during routine lab transfer procedures. The result is a lot of bogus data – papers written on the biology of various cell types are in fact about the biology of good old HeLa. I’m delighted, of course, and note the recommended book by Michael Gold, A Conspiracy of Cells: One Woman’s Immortal Legacy and the Medical Scandal it Caused (1986).

As so often on the Internet, the easy information comes first. This is perhaps all I need to know about HeLa, but if I want to get a fix on Henrietta I will have to pick through the rest of the websites the search engine has thrown up, in all their glorious irrelevancy. I will have to judge by the quality of the writing whether the people who wrote them are educated or intelligent or honest. Through various inaccuracies, I will arrive at a sort of consensus of fact – the facts will probably be the same ones as on this first website, but somehow richer and more known. And somewhere along the line, an accident will give me my own fictional Henrietta, or the relentless concatenation of near-relevance and irrelevance will smudge her, and possess her. There is a danger that information will kill Henrietta Lacks. I sit at the computer, growing all the while, wondering about the differences between reproduction and creativity; between either of these and what you might call spawning.

Click. The same rat bone marrow cell, this time tinted sepia, with a drop-shadow added for dramatic effect. It is not credited, and the (of course, anonymous) author claims it to be ‘a HeLa cell’. This is a typical infiltration of electronic content from one site to another – until everyone has a scanner, they will steal their illustrations and graphics from other websites, and the same pictures will turn up again and again. Everyone robs on the Internet. The more often a piece of information is used, the more likely it is to mutate: I suspect, though, that it mutates towards, rather than away from, the expected (‘Of course it’s not a rat, why would we put a picture of a rat cell on a page about HeLa?’).

I’m in a series of sites that show me, if I want to know, how to detect the papillomavirus type 18 DNA in HeLa cells (using some nifty gel and a PCR machine). I think this means that Henrietta Lacks had genital warts. I think this means that she slept around.

Click. A picture of Henrietta Lacks. A woman looks down at the camera: hands on hips, smiling, as if to say: ‘Is this the way you want me?’ It is a confident, intimate picture. She has a strong chin, her hair is in a Victory Roll, she is wearing a short fitted jacket and is standing in front of a brick wall. The text announces a documentary called Ihre Zellen leben weiter (‘Her Cells Live on’), to be shown on Swiss television. In the accompanying blurb, Margaret Gey is dropped from the Johns Hopkins research team, leaving ‘Dr Gey’ to lonely late nights in the lab, watching the petri dish where Henrietta Lacks’s cells were nurtured in a solution of placenta (it doesn’t say whose) and hen bone marrow. HeLa was apparently vital in the development of the polio vaccine; it was used to test cosmetic products and the effects of the atom bomb. Henrietta’s cells were the first ‘piece of human life’ (‘das erste Stuck menschliches Leben’) in space. Go girl.

Click. Wait. Wait. Error.

I don’t know where dead websites go. Perhaps they are not dead in any real sense, just lost, or inaccessible. This worries me – if the Internet is to evolve, surely it must both reproduce and die. Do websites do either? They certainly cross-fertilise, or cross-infect. But when people say ‘what will the Internet turn into?’ maybe it won’t ‘turn into’ anything, it will just spread (get less accurate at the edges, more stodgy in the middle).

Click. High School Biology. Students are asked what they would do if they were dying of cancer and a doctor asked them to donate some cells. ‘Your cells are the first success! This could be a medical breakthrough – your approval could allow researchers to evaluate drugs in a test tube before administering them to patients.’ More exclamation mark ethics. No one asked Henrietta Lacks for permission, that much seems clear.

Click. Wait. Another biology module, a different school, or college. ‘This is not so much concerned with the choice HL made, but with the speed at which information flows. The actions of the editors of scientific journals, the interaction of politics and science.’ There follows an interesting list of words. ‘Money. Mistakes. Contamination. Spontaneous transformation. New parameter. Invalid data. Tainted literature.’ The class will work from a copy of a Reader’s Digest article, which I do not have. At this point I should look up the Reader’s Digest site. It takes an effort to be passive on the Internet, but I hold the line. I am pregnant. I am not looking for information, I am looking for Henrietta Lacks. I am looking for an accidental insight into her red-brick, Baltimore, smiling afternoons.

Click. ‘Dresses for Henrietta Lacks’, an installation by Brisbane-based artist Jill Barker. ‘Dresses made of silver contact paper have been adhered to the windows. Each contains intricate structural patterns, like the DNA and other molecular structures of which we are all composed.’ A picture of a metal dress. In the text, John Gey has mutated to John Grey and Henrietta, for the first time, is black. (I do go back now, in a hurry, to the photo and find that this is indeed so.) Furthermore, ‘Henrietta’s family were never told of the research. Dr Grey [sic] claimed the donor’s name was Helen Lane or Helen Larson (supposedly in order to protect her anonymity). In the 1970s Henrietta’s name was released and the Lacks family were shocked … to them a part of their mother is still living and is being made to live on.’

Click. ‘Behind the façade of big hospitals, many African Americans can only see one big medical experiment.’ The Internet often provides its own narrative like this: the story ‘becomes’ one about race and therefore starts to move away from me. The cells in the petri dish are black cells, they are no longer universal, they are certainly not Irish (as I am). It bothers me that I did not notice what colour she was, it makes me feel foolish, or virtuously blind.

The website brings us on a quick trot through, among other outrages, the Tuskegee experiment, where, between 1932 and 1972, in a study funded by the US Federal Government, 400 black men were intentionally denied treatment for syphilis so researchers could track the effects of the disease.

Click. For sale: various growth media and cultures. For a mere $55 I can buy a litre of media for Chinese hamster ovary cultures. There are also ‘various magnetic goat antibodies’ for $79-$89 (50 ml) and ‘a laser tweezers micromanipulator’ for $25,000-$40,000. Snap on those latex gloves.

Click. ‘Why Cells Die.’ A very technical discussion. As far as I can make out, the problem is this: free radicals are generated in the mitochondria as part of the normal metabolic process. They cause somatic mutations and deletions of mitochondrial DNA, which in their turn produce more free radicals. An overload contributes to cellular necrosis and apoptosis. The cells die or self-destruct, in other words, and other cells replicate in order to replace them.

Every time a cell replicates, its telomeres get shorter. Telomeres bind the bottoms of chromosomes together, like the aglets on shoelaces, and after, say, fifty replications they wear out. This is called the Hayflick Limit. After it is reached, the cell can’t replicate and simply dies. Cancerous cells somehow ‘express’ telomerase and therefore avoid this problem – but don’t ask me how. As I say, this was a very technical essay, complete with footnotes, which, in the world of the Internet means that every single word is True True True.

Click. A personal diary. A trip to the Blijdorp Zoo to visit the Surinam Toad. Some musings about small information appliances (like an intelligent fridge) and how attached people still are to their large information appliances (like their computers). A discussion of difficulty and reward (the VCR v. the violin). A description of the sense of foreboding the writer had before witnessing an accident. Entry ends: ‘Took half a melatonin before I went to bed and slept very soundly.’ There is no mention of Henrietta Lacks.

Click. The American Congressional Record.

In Memory of Henrietta Lacks –

Hon. Robert L. Ehrlich, Jr
(Extension of Remarks – 4 June 1997)

Henrietta Lacks was born in 1920 in Clover, Virginia. At the age of 23 she moved to Turner’s Station, near Baltimore, Maryland, joining her husband David. She had five children, four of whom – Deborah, David Jr, Lawrence and Zakariyya – still survive. Ms Lacks was known as pleasant and smiling, and always willing to lend a helping hand.

Because it is the Congressional Record (unless it is not) we know that John Gey, or Grey, is in fact Dr George O. Gey, though his wife Margaret (though perhaps she was called Mary, who is to say?) has gone the way of all female scientific flesh. The citation ends: ‘I sincerely hope her name will also be immortalised as one of courage, hope and strength, and that due recognition will be given to her role in medicine and science.’ Well so do I. But what was extraordinary about her particular courage, and in what sense was this unknowing contribution to science ‘hers’?

Click. Click. Click. Repeat of Swiss TV timetable, more biology classes, mitosis, meiosis, all that. Click. DerTanz ums Grab. Henrietta reminds someone of the ‘Toraja’, a tribe perhaps, who carry their dead around with them for many years, like so much hand luggage. Click. Causes of cancer: 1. Infection by an oncogenic virus. 2. Chromosomal abnormalities. 3. Exposure to chemical carcinogens. Click. ‘How to use micro-organisms as vector cells in genetic engineering’. A fairly detailed guide. This, along with ‘Nuclear Bombs Made Easy’, I download and save for later.

Click. Error. Click. A man in California, I am warned, sued his doctor for marketing a cell line derived from his cancerous spleen. Click. ‘Twenty years later a disturbing factor came to light, the HeLa cells had the ability to infiltrate and subvert other colonies of alien cells.’ Now this is my favourite space on the Internet, the paranoid place, where people use words like ‘infiltrate’ and ‘alien’ to produce questions like: ‘Would the human immune system be capable of dealing with such an invader? Could the tales of vampire and werewolf bites have some basis in fact?’ I didn’t trust this site to start with because the background was pink. I think this means that I didn’t trust it because I knew it was written by a woman. Oh well.

Click. ‘Diana’s Bodyguard Conscious and Well Enough to Talk’. Scroll down through a local newspaper to find ‘Cancer Victim’s Family Receives Plaque’. Good old Congressman Ehrlich has awarded the Lacks family a plaque recognising her contribution to science. ‘A foundation named for Lacks plans to build a $7 million museum in her honour.’ I wonder what will be in the museum. Horrors, I assume.

Click. ‘Death Wish – Do Our Cells Want to Commit Suicide?’ A harmlessly inaccurate essay about living for ever. Of Henrietta Lacks the writer says: ‘We want the immortality of a god, not of a tumour.’ Quite. He hints at future resurrections: ‘Each cell contains a genetic blueprint for constructing Henrietta Lacks – who died back in 1951.’

Click. But – and there are often ‘buts’ in the gaps between websites – ‘by now the cells have mutated so much that it’s questionable whether they can still be considered “human” tissue.’ So if our previous author got his wish and reconstructed Henrietta, then the human being cloned from the cell would be perhaps unpleasantly different from the original, perhaps unpleasantly different, indeed, from the human.

Click. Wait. Now what? On the Internet, the meaning is so often in the gaps, and poor, mutated Henrietta is slipping between the cracks. I am waiting for the argument to continue; for something unexpected to clinch it or make it silly. This is the pleasure of browsing, and probably the trap. I used to teach multimedia students and found that they were almost exclusively interested in synchronicity and the random. This is not a kind of meaning that can be generated by a single author, it exists between authors. These students had plenty to say, they just thought it uncool to say it – all significance had to come from the group. There is nothing new about this, but it will always be frightening (and this time the group is global).

Click. ‘Life Itself. Exploring the Realm of the Living Cell’. By Boyce Rensberger. There is nothing better than coming across a whole chapter of a book on the Net, a proper book, especially on a page reassuringly hosted by washingtonpost.com.

The story of the American Type Culture Collection, where 20,000 frozen ampoules hold about 40 billion human cells in suspended animation. These cultures are routinely ‘resurrected’ and shipped off to researchers around the world. They include skin cells taken from a little girl who died of a birth defect in 1962, and brain cells of a 76-year-old man.

Rensberger quotes the cell biologist Matthias Schleiden’s insight into what we are, what our cells ‘are’ – they ‘lead double lives, their own and that of the organism of which they are a part’. He goes on to say that ‘the human body is a republic of cells, a society of discrete living beings who have, for the good of the society as a whole, sacrificed their individual freedoms.’ I am not sure what individual freedoms my cells possess, though I know they can go on strike, especially the ones in my ex-smoker’s lungs. But my child, when still very small, made itself known to me – first in a dream (this is only true, I am only reporting what is true) when it was under a hundred cells ‘big’, and then in a craving for Japanese seaweed. I have no idea how small a hundred cells are, but their impulse was, from the very start, not so much republican as despotic.

As evidence of this cell ‘republic’, Rensberger cites the mechanism known as ‘programmed cell death’. If a cell goes ‘wrong’ its neighbours will order it to self-destruct. This is what is supposed to happen with cancer cells, but sometimes, of course, doesn’t. It also happens to the webbing between my child’s fingers. At least I hope it does.

Rensberger worries that we may find the world of cells ‘miraculous’ – though he allows wonder. Most wondrous of all is the cells’ tendency towards self-assembly. Skin cells will form a sheet in the dish, breast cells will manufacture and secrete milk protein, and ‘muscle cells will sometimes weld themselves into large fibres that spontaneously begin twitching in the dish. When cells of the heart muscle do this, they begin twitching rhythmically.’ Perhaps the body is just a yearning. Every good scientist tries to rid his prose of all hint of intention, and fails. They love their cells and molecules as fiction writers love their characters, they watch them and will them on. Rensberger celebrates the ‘glory’ of a mechanistic view of life, quoting Jacques Monod, another important cell biologist, who says: ‘No preformed and complete structure existed anywhere: but the architectural plan for it was present in its very constituents.’ It seems that what molecules, and later cells, contain is information. This is not how I understand the word ‘information’, which, after all, can be either correct or incorrect. It is information as an imperative, information as a seed. ‘The necessary information was present, but unexpressed, in the constituents. The epigenetic building of a structure is not a creation; it is a revelation.’

So I am pregnant. I am busy building bones, in an epigenetic sort of way. The child is being revealed inside me, but not yet to me. The child is being revealed to itself, but slowly. I wonder if it is lonely: I find pregnancy to be a vastly lonely state. This child cries already, or so I am told. I fancy that it likes the sound of its father’s voice, that it kicks at songs by Nina Simone. I have no idea what might cross its mind, as different expressions cross its face. I have no idea what it is like to be of recently specified sex, to have webbing between my fingers and toes and then to lose it. And of course I have every idea what these things are like.

I surf the Net and grow, my belly pushing towards the keyboard. I should work, but I would rather lie on the sofa and be. Sometimes, for hours at a time, I do nothing but exist. I find it quite tiring. I say to my-sister-the-doctor that my brain is gone. She laughs and says: ‘You’ll never get it back.’ I panic and download an IQ test from the Internet. I have never done an IQ test before, I don’t believe in them. The test tells me that, on its terms, I can think perfectly well. It is just, perhaps, that I can’t be bothered. I grow large and swim like a whale through all this information. There is a part of me now that is entirely happy. I sit and listen to my own blood, or to someone’s blood. ‘I am no more your mother,’ said Sylvia Plath. ‘I am no more your mother than …’

As for Henrietta – I am pregnant. I cannot conclude. I am lodged at AltaVista 44, a site called ‘What Happens’: it’s the story, among other things, of her revenge. Everything on the Internet is about what someone else said. There are so few primary sources, I sometimes feel that the whole thing is just a gossip factory. ‘What Happens’ contains a summary of Michael Gold’s A Conspiracy of Cells, which is, of course, unfindable, out of print.

The book says much about HeLa’s ability to overwhelm other tissue cultures in the lab and how it led to widespread and unacknowledged contamination of data. Researchers shared their cultures around like gardeners do clippings, and as HeLa took over in dish after dish, papers about skin cells and lung cells were in fact based on the cancerous cervical cells of Henrietta Lacks. The problem reached unbelievable proportions – in 1966 Stanley Gartler compared 17 cultures of ostensibly different tissue types and found that they were all, in fact, HeLa. In 1968 the American Type Culture collection tested all its line of human cells, and ‘of these 34 cell lines, 24 proved to be HeLa.’ In 1972 Russian scientists supplied American scientists with six different cancer cells taken in different parts of the Soviet Union and ‘all six turned out to be HeLa.’

The author of this site, Louis Pascal, is more interested, however, in the refusal of the scientific community to acknowledge that mistakes were made. He traces the relationship between the whistle-blower Walter Nelson-Rees, who worked at the cell bank at the University of California, and the various journals who refused to publish him. Nelson-Rees, he says, was ‘effectively forced to retire’ in 1981. Pascal claims a similar history for his own attempts to expose the truth about the source of HIV. There follows a passionate and plausible essay about the possibility that HIV crossed over from SIV (a variation of the virus in chimpanzees) via the polio vaccination project in Central Africa in the 1950s – in which HeLa also played its part. This is the earlier, underground version of the argument put forward by Edward Hooper in The River: A Journey back to the Source of HIV and Aids, but when I stumble across it, it’s all news to me.

Here is the apotheosis of the Internet: forbidden information, a conspiracy against the truth. Overturning my prejudices, Pascal is all content and fiercely political. But the fact that he uses copious footnotes and is prefaced with a note written by a professor from the University of Woolagong, does not mean that I know he is sane. I find myself involved in a drama of verifiability. My ignorance makes the information urgent. I have no scientific training, I am ordinary and sometimes frightened and I have no reason, finally, to disbelieve him.

Click. ‘A Crime of Manners’. Blurb for a romantic fiction with a cast that includes a Lady Fuddlesby and a parrot called Sir Polly Grey. The hero, Giles, Duke of Winterton, decides to pay attention to an earl’s daughter who has many bountiful charms that the heroine, ‘Henrietta, lacks’. So here is my saint: a woman who, according to the Congressional Record, was like all saints in that she ‘was known as pleasant and smiling, and always willing to lend a helping hand’. A woman whose womb carried five single cells that became children and one single cell that killed her. A minor martyr in an as yet unspecified cause. I think I should leave her alone.

Out at my sister’s I ask a dinner table of doctors who owns the placenta, me or the child. Legally, I am told, it is a ‘waste product’. Hospitals sell placentas all the time, sometimes to the cosmetics industry. This seems all right to me, though I worry about the lipsticks. Everyone loves scaring me about having babies. There is much gleeful talk of epidural and episiotomy. When it came down to it, none of the men actually wanted to be in the labour ward with their wives, but they gritted their teeth and sat it out anyway. All of them play golf.