The Immortal Life of Henrietta Lacks by Rebecca Skloot; Pan Books; Price: Rs.325; 431 pp
In early 1951, Henrietta Lacks, a poor black woman who had once been a tobacco farmer in Virginia, was treated for highly aggressive cervical cancer at the free coloured ward of Johns Hopkins Hospital, in Baltimore, Maryland. She died an excruciating death at the age of 31 the same year after receiving radium treatment, the standard curative for cervical cancer in the 1950s. She left behind a husband and five children, the youngest, a mere infant.
Before she died, without her knowledge or consent, the attending doctor took two dime-size samples of tissue from her cervix, one cancerous and one healthy, and gave them to George Gey, a scientist who had been trying to establish a continuously reproducing, or immortal, human cell line for use in cancer research. These became the HeLa cells (named from the first two letters of her first and last names), an immortal line of cells that helped revolutionise modern medicine.
Because HeLa cells are unusually resilient and robust and multiply at an astonishing rate, they succeeded where all other human samples had failed. Gey provided them free of charge to any scientist and researcher who requested samples. Later they were bought, sold, packaged, and shipped by the trillion to laboratories around the world.
Sixty years later, Henrietta Lacks’ tissue has yielded an estimated 50 million metric tons of HeLa cells. Today, trillions of them are still alive, and if they were laid end to end, they would encircle the earth three times. HeLa cells have generated a billion-dollar medical and pharmaceutical industry, helped biomedical research in cancer, virology, cloning, gene mapping, and in-vitro fertilisation. Scientific and medical researchers produce about 300 HeLa-related studies a month, steadily adding to the collection of 60,000 that already exist.
Yet little is known about the woman behind HeLa, who is variously identified as Henrietta Lacks, Helen Lane or Helen Larson, but is often nameless. Her family learned of her “immortality” only 20 years after she passed away in the 1970s, when scientists started using HeLa in research, again without the family’s consent. They benefited not at all from the involuntary ‘donation’ of their mother’s tissue.
Rebecca Skloot, a science reporter, who first heard of HeLa in her high school biology class, embarked upon a ten-year mission to set the record straight. Her book — equal parts popular science, historical biography, detective novel, and investigative journalism — is a compassionate and sensitive account of two parallel stories. The first is the history of HeLa and its contribution to medicine, and the second the story of the traumatic burden Henrietta’s immortal cells imposed upon her deeply troubled family as they struggled for understanding, reconciliation, and recognition.
Skloot’s account is based on extensive primary and secondary sources (medical records, court documents, police records, family photographs, newspaper and magazine reports, wills, deeds, and birth and death certificates) and more than thousand hours of interviews with the Lacks family, friends, scientists, journalists, lawyers, bioethicists, health policy experts and historians. The narrative switches between multiple stories and timelines — Henrietta’s life and death, the medical discoveries and breakthroughs that followed in the decades after her death, and Skloot’s own latter-day quest to win the trust of the Lacks family and tell their story. At the heart of this search for justice and healing is Deborah Lacks, the younger of Henrietta’s two daughters, and her desperate desire to learn about the life and legacy of a mother she barely knew, and her struggle to have the world recognise her mother’s contribution to the medical sciences.
Skloot’s fascinating — and often harrowing — book humanises hard scientific data by adding human-interest elements, but she writes clearly and accessibly about science and medicine. Although she does not offer an explicitly feminist or otherwise gendered analysis, the intersection of gender, race, and class in US society underpins the narrative. The story is not merely about medicine and science, or about informed consent, violation of privacy, and medical ethics. It is simultaneously about race, class, gender, poverty, ignorance, superstition, and inequality.
Ironically, Henrietta’s children and grandchildren continue to struggle with poverty, drug addiction, violence, serious illness, unemployment, prison, poor education, and various other ills, all too often without health insurance. As Deborah asks: “If our mother cells done so much for medicine, how come her family can’t afford to see no doctors?”
To be fair, it should be noted that Johns Hopkins, and most other research facilities which worked with the HeLa cells, haven’t commited any crime. Addressing the current legal and ethical debate surrounding tissue ownership and research, Skloot notes that it wasn’t illegal for doctors to take Henrietta’s cells without her knowledge in 1951, and not even in 2009, when this book went to press. Storing blood and tissue for research did not legally require informed consent, because the law governing such things does not generally apply to tissue research. Nevertheless, given the widespread commercialisation of medical research, gene patenting, and proprietary information, the issues of tissue ownership, patients’ rights, privacy, informed consent, compensation, and money have become increasingly complicated. Policy analysts, scientists, philosophers, and ethicists have discussed ways of compensating tissue donors, but worry that this may inhibit scientific and medical progress.
Deborah died in 2009, before this book went to press. As she promised Deborah, Skloot set up the Henrietta Lacks Foundation, which provides funding for education and healthcare to the descendants of Henrietta Lacks. Had Deborah been alive, she would have been thrilled to learn that not only did the book on her mother become an acclaimed bestseller, but that it is also being made into an HBO film produced by Oprah Winfrey and Alan Ball.
Jimmy the Terrorist by Omair Ahmad; Penguin; Price: Rs.350; 185 pp
Sensitively crafted and deeply evocative, this is perhaps the best novel I have read about the unenviable predicament of the Muslim minority in contemporary India. It is realistic without being preachy, sensationalist or apologetic and describes the painful dilemmas confronting vast numbers of Muslims in the context of growing Islamophobia and incremental anti-Muslim prejudice on the one hand, and rising Islamic fundamentalism on the other. Narrating the history of a north Indian Muslim family in post-partition India, Ahmad masterfully highlights the gamut of social, economic and cultural factors which have prompted the demonisation of Muslims and Islam.
The story is set in Moazzamabad, a decaying north Indian mofussil town, established centuries ago by a scion of the Mughal dynasty. The Muslim gentry of the town, once feudal rulers, find their world completely overturned following the partition of India in 1947. Suddenly bereft of all semblance of political and cultural dominance and having lost most of their estates to land reforms, they are faced with the prospect of penury in a new economy that has little use for their skills.
The novel revolves around Rafiq, a Muslim from a modest background who has providentially married into a prominent feudal family of Moazzamabad. Part of the dowry he receives is a low-paid job in a minority Muslim college. Constantly reminded of his humble antecedents by members of his wife’s family, he increasingly finds solace in religion. He begins to frequent the local mosque, much to the chagrin of his wife’s liberal relatives, who find this yet another reason to mock him. The imam of the mosque is a gentle soul, who is greatly troubled by the deterioration of inter-community relations in the town. He advises patience in the face of growing anti-Muslim prejudice, but younger members of the community are increasingly driven to despair as they witness militant Hindu politicians, deliberately stoking violence against Muslims for political gains. Their shared perception of victimhood is fuelled further by a section of unscrupulous mullahs, who thrive on their insecurity, for that is precisely the basis of their power and authority within the community.
It is in this surcharged communal environment of Moazzamabad that Rafiq rears his son Jamal, nicknamed Jimmy, struggling to provide him with a decent education in a Christian missionary school, which is the only passport out of the morass into which the Muslims of this hick town are mired. As a Muslim, and also as the son of a man of modest means, Jimmy is a victim of double-discrimination. School life is a daily torment. Constantly ragged, he withdraws, focusing his attention on studies. But when he is wrongly accused of theft by a fellow student, and shamed before the entire school, he is drawn into a friendship with another Muslim student, Khalid, a habitual thief. Although Jimmy never approves of Khalid’s criminal ways, they bond.
Accused of a major theft, Khalid is arrested by the police who subject him to brutal torture. Here, Ahmad powerfully highlights a pervasive phenomenon in Indian society — communalisation and deep-seated anti-Muslim prejudice within large sections of the agencies of the State, including, and especially, the police. He also sensitively and movingly describes the anguish and sheer desperation of Muslims, reduced to the status of second-class citizens. At least in the Indian context, it is the pathetic socio-economic condition rather religious fanaticism, which is the root cause of so-called Islamic fundamentalism or Islamic terrorism. The chief virtue of Jimmy the Terrorist is that it vividly illustrates how easy it is for Muslim youth frustrated at every turn to become susceptible to radical and vengeful interpretations of the Holy Quran.
Following Khalid’s arrest, the situation in Moazzamabad rapidly deteriorates. Soon, the town is rocked with violence inflamed by an ambitious politician who thrives on anti-Muslim sentiment within the majority population. The gentle imam of the mosque which Rafiq frequents, is burnt to death, and the town placed under curfew. The Muslim ghetto bears the brunt of police brutality and rampaging Hindu mobs operating in tandem. Finding himself and his fellow Muslims beleaguered and driven to the wall, with no hope for any deliverance, docile Jimmy is driven to become a ‘terrorist’.
Ahmad deserves appreciation for treating such a complex subject with remarkable finesse and sensitivity. He exposes the modus operandi of the politics of communalism and religious chauvinism, both Hindu and Muslim, and graphically illustrates its devastating consequences upon lay people in plural societies. Anyone reading this sensitive novel is likely to be deeply disturbed by the havoc that politicised religion and narrow communalism continue to play in the lives of innocent millions — not just in obscure Moazzamabad, or in India — but the world over.