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Henrietta Lacks, a 31-year old nondescript coloured woman, lies six feet under an unmarked grave in the Lacks cemetery in Clover, much the way common folks depart- unsung, unheralded. Her white promiscuous ancestors who fathered many generations of illegitimate Lacks from black woman slaves lie even deeper, several feets below them. In death the coloured Lacks managed to come out on top of their white ancestors.
The book, though, isn’t about smouldering embers of racism that still afflicts erstwhile slave owning societies. Henrietta’s existential significance oversteps racism. It is singularly different. Twenty years after she died from cervical cancer, her family learns as much as 800 pounds, and growing, of ‘her’ lives on. That’s what this book is about, the whos, hows and whys of this bafflement.
As engrossingly narrated as a thriller, only that the plot is real, of real people, of real ethical issues in medical treatment and research, and most intriguingly of the question who owns a patient’s tissues.
Henrietta Lacks, mother of five children, felt a knot at the tip of her womb. John Hopkins Hospital, Baltimore diagnosed it to be a bulbous malignant tumour. Despite radium therapy the cancer continued to spread inexorably and a year later, in 1951, consumed her at the unlikely age of thirty one. Surprisingly, her biopsied cancerous cells proved extremely resilient and grew prodigiously in a culture medium in Dr Gey’s bio-lab. Dr Gey grew the cells in phials, labelled it HELA , and sent it across the world to medical research teams and whoever asked for it. Later it came to be sold in marketable lots and still is.
What made HELA so virulent and hardy ? Normal cells divide at most fifty times, the Hayflick limit , in its lifetime. With every cell division the tail of chromosomes, called telomere, shortens. When it vanishes the cell dies. Only malignant cells, transformed by virus or genetic mutation, can become immortal if they produce an enzyme, telomerase, that regenerates depleted telomeres. HELA is of the immortal kind.
Unknown to the family HELA facilitated trail blazing medical researches extending the frontiers of our understanding of human biological processes. The polio vaccine, many drugs and antibodies producing chemicals, demystification of genes and building the highways to genetic engineering owe much to experimentation with HELA. Its progenitor, though, remained shrouded in anonymity for decades till airing of a 1996 BBC documentary. And till Rebecca Skloot, a biology student, heard of HELA in a biology class at the turn of millennium and got suitably obsessed.
Ten years of dogged research, and digging deep into her credit card limit and student loan resources the author finally unveiled the pathetic and fruitless existence of the real Henrietta vis-a-vis the ‘celebrity’ HELA . All of it a lone wolf effort. Painstakingly she reconstructs the life story of Henrietta and her five surviving children. Side by Side ,she adverts to medico-legal cases that brought to fore unforgivable want of humane considerations in conduct of medical research. Unarticulated in the 50s these surfaced with damning ferocity in the 70s to end in the acceptance of the principle of not mere consent but ‘informed consent’ from subjects of human experimentation. The imperative need of medical fraternity to access parts of human body for research too was reckoned in the historic verdict of Supreme Court of California. It’s worth recounting.
Dr David Golde at UCLA between 1976-83 regularly collected samples from bone marrow of Mr Moore, a leukaemia patient he had operated upon, ostensibly for follow up monitoring but actually for surreptitiously developing a cell line from his tissues. Before the patient got wind of it Dr Golde had the cell line patented under the brand name of MO and exploited it commercially. Moore sued claiming property rights over his tissue, and finally the case moved to the SC. It ruled that when a patient left his tissues in a doctor’s office or lab he abandoned them as waste. Anyone could take the garbage and sell it. Otherwise not only would medical research be hindered by restricted access to necessary raw material but end up “creating a field where with every cell sample a researcher purchases a ticket in a litigation lottery”. Patient’s consent would become a marketable right and would disincentivize medical research.
It’s another matter that many people who had valuable blood, unique in some ways, turned their bodies into businesses by contracting with biotech firms. That is why the Henrietta family could not fathom why they could not get a cut from the sale of HELA that had done so much for human welfare. One of Henrietta’s son woke up to more than $125000 in debt from a quintuple bypass surgery because he did not have health insurance. Deborah, her daughter, lived and died in an assisted living apartment making do only with social security money. “Everybody in the world got her cells only thing we got of our mother is just them records( her medical records).”, she bemoaned.
The book hints at a prevailing sentiment among medical fraternity that as indigent coloured received free treatment in hospitals their bodies were fair game for conducting medical research. Charity had to work both ways - use of their bodies for medical research as a legitimate recompense for free treatment.
The author touches an issue that may still hold some relevance. Should the patient be comprehensively briefed - the diagnosis, the line of proposed treatment, the likely chances of a full or partial recovery, the side effects ? In the 50s ‘Benevolent Deception’ was widely practiced as full disclosure was held to be upsetting and detrimental to the patient’s psychological predisposition towards the treatment. Which way has it been settled now ?
HELA continuing to grow monstrously in biotech labs poses a dilemma. Evolution creates new species through transmutation of cells in existing organisms. So it is with HELA ! Each HELA cell in the process of division undergoes random changes from generation to generation. Henrietta bits, slightly different, evolving separately. Viola ! isn’t HELA then a separate species, one that is ‘alive’ in an unusual way but not ‘living’ in the usual way, like the Norse goddess of death, Hela, ‘living’ trapped in a land between hell and the living.
Cells surviving the host isn’t scriptural Immortality. For that matter, ‘Mortal beings, Immortal cells’ itself sound oxymoronic, if not, ludicrous. Nonetheless, cellular biology is pregnant with unimaginable possibilities for the future of mankind. Not as wild as Deborah’s dread of running into one of her mother’s clones in London sallying forth from a whole community filled with Henriettas. But control and conquest of diseases and promotion of human wellness in more ways than one, surely.
Truly, the book is a reader’s bonanza . A real life drama of a poor, coloured family plodding through life in a social milieu prejudiced by the colour of human skin. Alongside, a fleeting glance at cellular mechanisms that animate our ‘being’. An irresistible cocktail of human interest and layman’s science .
And one that sustains readers’ interest to the very end. Fascinating, delightful and insightful.
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