One of the two people to whom cancer physician, researcher and writer Siddhartha Mukherjee dedicates his new book, The Gene: An Intimate History, is a girl named Carrie Buck. It’s unlikely many of you would have heard of her. By the time she turned 21, Buck, born in 1906, had become a symbol of all the warnings explicit in Mukherjee’s book about the dangers of genetic modification. Less than a decade before the genocide—a word, Mukherjee points out, with the same etymology as gene—of Jewish people in Germany, negative eugenics, or the forced sterilization of people considered genetically inferior so that their kind could be weeded out of society, was a point of raging debate in Britain, vocal participants being Charles Darwin’s cousin Francis Galton and science fiction writer H.G. Wells.
In the US, in the meantime, it was already being actively pursued, colonies having been set up to confine the allegedly “feeble-minded”—who, coincidentally, lived in squalor, and were of a different class from those passing judgement on them—including Buck and her mother. Feeble-mindedness in these camps, Mukherjee records, came in three categories: idiot, moron and imbecile. While Buck’s school records testify to her being “good” in her lessons, she was sent to the camp allegedly to cover up a rape that had led to her pregnancy.
In 1927, no less than the US supreme court wholeheartedly agreed that it was imperative that Buck be sterilized, making her the first subject of this horrific experiment, and effectively silencing those questioning the morality of such an act. “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes,” the chilling verdict read. Buck lived till 1983—when the science of genetics was well under way—a living example of the efforts of society to genetically cleanse itself of “undesirable” people.
In The Gene, Mukherjee has quoted English biologist William Bateson’s pre-emptive warning of this danger (Bateson died a year before Buck’s sterilization): “The science of heredity will soon provide power on a stupendous scale, and in some country, at some time not, perhaps, far distant, that power will be applied to control the composition of a nation. Whether the institution of such control will ultimately be good or bad for that nation, or for humanity at large, is a separate question.” He couldn’t have known how very soon his prediction would be realized.
Lest it be thought otherwise, Mukherjee is not being a one-sided critic of this science. His book is a riveting history—a medical as well as a social narrative—covering the discovery of the science of heredity, the advances being made in gene therapy in contemporary times, and the exciting prospects potentially arising from it in the future. Indeed, Mukherjee begins the book with a story of the history of madness in his family, a line that runs through the book, thereby suggesting that he, and successive generations of his family, like families with similar histories, may well have a personal stake in this quest for the successful identification of faulty genes, as well as gene therapy. Yet, alongside, he also advises caution, tempering one’s enthusiasm over new discoveries with deep reflection of the consequences of the choices one makes at each step of this journey, the high morality required of those “playing God”.
These questions of ethics are ones that Mukherjee presumably needs to confront on a regular basis in the course of his own work. An assistant professor of medicine at Columbia University, Mukherjee’s laboratory has reportedly identified genes that regulate stem cells, and is credited with discovering genetic alterations in blood cancers.
Mukherjee has previously written the Pulitzer Prize-winning biography of cancer, The Emperor Of All Maladies(2011), and it seems inevitable that he should have followed it up with The Gene. Towards the latter part of Maladies, he writes: “Is the end of cancer conceivable in the future? Is it possible to eradicate this disease from our bodies and our societies forever? The answers to these questions are embedded in the biology of this incredible disease. Cancer, we have discovered, is stitched into our genome.” A paragraph down, he continues, “Science embodies the human desire to understand nature; technology couples that desire with the ambition to control nature.”
Mukherjee’s eloquent prose makes his two books, on subjects as complex as cancer and genetics and the future of medicine, indeed the future of humanity itself, a fascinating read for a layman. No less are some other books written in the recent past by members of the medical profession, notably Paul Kalanithi’s When Breath Becomes Air (2016) and Atul Gawande’s Being Mortal: Medicine And What Matters In The End (2014), each elegantly putting forward the moral dimensions of their chosen profession, and their search for the meaning of life itself.
“The true place of science is humanity,” says Kalpana Swaminathan, a Mumbai-based paediatric surgeon and author of several books of fiction and non-fiction. She and fellow surgeon Ishrat Syed—they write together under the name Kalpish Ratna—have written a narrative history of the plague (Room 000: Narratives Of The Bombay Plague) and of epidemics in the Indian port city (Uncertain Life And Sure Death: Medicine And Mahamaari In Maritime Mumbai). They are currently working on a book on the Zika virus. “We recognize that this is the end of the antibiotic era,” says Swaminathan, who, along with Syed, has been absorbed in the science of emerging diseases as a result of environmental change. But, she explains, the most relevant point about the Zika virus is that it is a catastrophe waiting to happen, and interest in the virus stems from the impossible situation of the woman whose baby is being born with a deformity.
Kalpana Swaminathan, along with Ishrat Syed, is working on a book on the Zika virus. Photo: Abhijit Bhatlekar/MintThe thing with all these books that have touched a chord with us is also the human face they present of the medical community, the sensitivity and empathy that we have missed in many of our personal interactions with the doctors, and hospitals, we visit. One wouldn’t be overstretching the point in noting that there is sometimes a deep suspicion of the doctors, and the therapies and medicines that are recommended. In India, especially, the growing number of specialists, as opposed to general physicians, and the lack of sustained dialogue between the two, has resulted in a distance, and aloofness from patients, and a mystification in the latter of the science of the human body.
We forget then what Hemant Morparia, a radiologist in Mumbai as well as a cartoonist, identifies as the reason why some doctors, “the reflective sort”, can turn out to be such eloquent writers. “In a profession like medicine, you are confronted with a condensed and intense form of humanity. Pain, sadness, imminent death, complications, ill children, abandoned parents, poor patients who cannot afford treatment—you see more of humanity in a shorter time than when writing away in a room in the hills.”
This, of course, leads to compelling fiction as well. In the introduction to one of his cartoons on detecting a case of lead poisoning, Morparia writes, “The doctor is suddenly transformed from a cap mask-wearing medico, to a deerstalker hat-wearing detective.” He echoes Swaminathan when she speaks of how one profession influences the other, consciously or unconsciously, and how one “holds the surgical knife as one might hold the pen”, allowing one to understand what life has to offer, to explore the human condition.
“You also bring to the field a highly trained degree of observation and deduction,” adds Swaminathan, author of a series featuring the detective Lalli, also a doctor. Incidentally, Room 000, on the discovery of a vaccine that stems the plague in Bombay, is a book of non-fiction but is also narrated in the style of a whodunnit.
Swaminathan points out that writings on medicine that are meant for ordinary people to read can be traced as far back as the Egyptian papyri. It’s uncertain who authored them, she notes, but it’s likely “people wrote what they saw”. She also mentions the Charaka Samhita in India, and the “marvellous” writings of Arab physicians, none of them meant exclusively for physicians. The joy of reading physician-writer William Osler is akin to the joy of reading a novel, Swaminathan says.
The Edwin Smith papyrus, the world’s oldest surviving surgical document, written in Egypt in 1600 BC. Photo: Wikimedia CommonsLiterature and the emotional roller-coaster ride involving disease and death have seldom been divorced from each other. Shakespeare made evocative metaphorical use of the extensive medical information he was apparently privy to, and reams have been written on the subject. “Diseases desperate grown/ By desperate appliance are relieved,/ Or not at all”: Mukherjee introduces The Emperor Of All Maladies with this apt quote from Hamlet. If Sylvia Plath’s novel Bell Jar, on a protagonist suffering from clinical depression, can make the reader question his or her own sanity, Mark Haddon’s The Curious Incident Of The Dog In the Night-Time humanizes a child with behavioural difficulties. If Mary Shelley’s Frankenstein, on a modern science experiment on creating life, echoes the current ambitions of genetic science, Robert Louis Stevenson’s TheStrange Case Of Dr Jekyll And Mr Hyde is a fantastical exploration of a kind of mental illness that has also affected a member of Mukherjee’s family, and which pushed him to write his new book.In 2014, Hansda Sowvendra Shekhar, a doctor from a primary healthcare centre in Pakur, a district town in Jharkhand, published an evocative debut novel, The Mysterious Ailment Of Rupi Baskey. The novel begins: “Rupi Baskey cannot believe she was once the strongest woman in Kadamdihi, who bore her eldest squatting in the middle of a rice paddy, shin-deep in slush.” The novel quickly goes on to relate her descent from this position of enviable health to a constant feeling of “acute fatigue”, “a funny feeling in her stomach”, headaches, an inability to laugh out loud, and a perpetual fear of losing her husband and son to the “evil” Gurubari, her sister-in-law. Is there more to her than meets the eye?
The symptoms of clinical depression may be evident to our eyes, though Shekhar never defines it as such, choosing instead to flirt with the fear of the supernatural that the unexplained can bring among people in small towns. The story, he admits, is the result of events that he observed in his hometown of Ghatsila. “Being a doctor makes one observant to details,” he explains. Many of the patients that come to them in Pakur, not just to the doctors but any health professional, including nurses, just want to talk, to bare their hearts, he says. So one comes to know, for instance, if they are not being treated well by their family, and whether that may, after all, be the crux of all their problems—similar, in a sense, to the story of Rupi Baskey.
For the most part, though, the popular fictional introduction of medical themes has come from Robin Cook’s medical thrillers. He shot to fame in the 1970s with his second novel,Coma, on an organ donation scam. Cook mentions in an interview that after his first book failed, he decided to try a mix of Jaws and Love Story in order to catch reader interest and ensure his “message is not lost”. Cook’s books pick up issues most relevant to the medical profession, from stem cell research to genetic engineering to medical tourism, but are racy, horrifying, fantastical even—so one would worry somewhat about the message going through to readers.
It’s thus reassuring that medical science can be demystified by people like Mukherjee, with all the narrative talent of a fiction writer, the weight that comes from his professional experience, and with an empathy that is most comforting. This last can backfire in the most intimate of circumstances, though. In Maladies, Mukherjee narrates an incident of an elderly Italian woman with widespread cancer who had come to consult him. His advice that she be given palliative drugs instead of being subjected to strong medication and treatment that her body wouldn’t tolerate did not go down well with the woman’s daughter, who subsequently took her mother to another doctor. Mukherjee writes, “I do not know whether the elderly woman died from cancer or its cure.”
This is the essence also of what Kalanithi and Gawande write about in the books mentioned earlier—death cannot be cheated, what matters in the end is how we live our lives. Kalanithi, a neurosurgeon of brilliance, discovered he had lung cancer in the last year of his residency, and died in March 2015 at age 37. He’s survived by his wife and his daughter, a toddler, conceived and born when his cancer was briefly in remission.
His book, urgently written during this period, is an intimate look into the mind of a doctor who meets death in the eye daily, who transgresses every day by violating the sacred space of the human body, who needs to make difficult choices related to life and death every day. “As my skills increased, so did my responsibility,” he writes, “Learning to judge whose lives could be saved, whose couldn’t be, and whose shouldn’t be requires an unattainable prognostic ability. I made mistakes. Rushing a patient to the OR to save only enough brain that his heart beats but he can never speak, he eats through a tube, and he is condemned to an existence he would never want…. I came to see this as a more egregious failure than the patient dying. The twilight existence of unconscious metabolism becomes an unbearable burden, usually left to an institution, where the family, unable to attain closure, visits with increasing rarity…”
This is a decision he took for his own self, too, at the end. In a book that is as heartbreaking as it is moving, Kalanithi leaves the reader grateful that doctors like him lived too, doctors for whom the profession continued to be pursued with the idealism that takes so many to medical schools. “Amid the tragedies and failures, I feared I was losing sight of the singular importance of human relationships, not between patients and their families but between doctor and patient. Technical excellence was not enough. As a resident, my highest ideal was not saving lives—everyone does eventually—but guiding a patient or family to an understanding of death or illness.”
Gawande, who is a surgeon in Boston and a professor at the Harvard Medical School and Harvard School of Public Health, too hasn’t been numbed by years of practice, and displays a similar empathy for patients. Being Mortal starts with a telling line: “I learned about a lot of things in medical school, but mortality wasn’t one of them.” The book focuses on geriatric care, how medical science has prolonged life, but how the last journey towards death in old age has now become a cold medical experience. “In a nursing home, the official aim of the institution is caring, but the idea of caring that had evolved didn’t bear any meaningful resemblance to what Alice would call living. … The trouble was that she expected more from life than safety. ‘I know I can’t do what I used to,’ she said, ‘but this feels like a hospital, not a home.’”
In writing about the eventuality of mortality and thus living a meaningful life, these doctors’ works intersect with the ideas and themes of many literary works. What appeals to the heart in these books on medical science and practice is their deep sense of humanity.
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