On January 20, 2002, Leon Kass, chairman of the newly appointed President’s Council on Bioethics, opened the Council’s first session with a discussion of Nathaniel Hawthorne’s 1843 short story “The Birth-Mark,” the tale of a scientist who kills his beautiful wife while removing a birthmark from her face. It would have been an unusual start for any government panel, but for one dedicated to scientific issues, it was especially surprising.
Yet strange as it might seem, lawmakers and scientists would benefit from a greater engagement with literature. A richer public bioethics — one that combines the insights of science with those of philosophy and of the humanities more generally — is very much in need. As Kass explained in Being Human: Readings from the President’s Council on Bioethics (2003) — an anthology of poetry, essays, and fiction — literature “can contribute to a richer understanding and deeper appreciation of our humanity, necessary for facing the challenges confronting us in a biotechnical age.”
Few authors have faced those challenges more squarely than Jodi Picoult. The author of 16 books and counting, Picoult (pronounced PEA-koe), 42, is a literary phenomenon; over 15 million copies of her books have been sold worldwide. Her last three books shot straight to No. 1 on the New York Times bestseller list, and her breakthrough novel, My Sister’s Keeper (2004), is getting the major-motion-picture treatment this summer with a film starring Cameron Diaz. Picoult has legions of devoted fans (her official newsletter is titled The Pi-Cult), and a knack for turning out page-turners that tap deep into contemporary anxieties, longings, and fears.
For a queen of commercial fiction, Picoult’s home life is decidedly unglamorous. She lives on an eleven-acre farm in rural New Hampshire with her husband of 19 years — an antiques dealer — and their three children. But while Picoult might seem like any other middle-aged mom, she has a demon work ethic. An early overachiever, she’s racked up two Ivy League degrees (a B.A. from Princeton and a master’s in education from Harvard). She cranks out another novel every nine months, waking up at 5:30 each morning to write. All her books are heavily researched: She observed cardiac surgery for Harvesting the Heart (1993), studied bone-marrow transplants for Perfect Match (2002), and even spent a day in jail for The Pact (1998).
When it comes to the actual writing, Picoult’s formula is simple: Take a hot-button issue and tell the story through a rotating cast of characters — typically small-town New Englanders — on both sides of the question. Picoult describes her work as “fiction of morality and ethics,” and she is particularly drawn to the moral, legal, and ethical dilemmas raised by modern medicine. Her novels have dealt with such thorny issues as organ donation (Change of Heart), savior siblings (My Sister’s Keeper), eugenics (Second Glance), and euthanasia (Mercy). Her latest, Handle with Care (Atria, 496 pp., $27.95), follows a wrongful-birth suit. (She’s currently at work on a novel slated for 2011 that will focus on embryo donation.)
Picoult’s fiction raises fundamental questions about human dignity: What constitutes a valuable life, and who gets to decide? She’s a favorite on the book-club circuit and in bioethics courses, in part because of her open-ended approach. She gives each character the chance to make his or her case to the reader, provoking debate and discussion among readers. Although she can be overly didactic at times, Picoult avoids sensationalism and treats her subjects with sensitivity and seriousness. But most of all, her portraits of families in crisis help us to explore the human implications of medical breakthroughs — a corrective to what are too often abstract, technical debates. As Picoult explained in an interview, “You’ve got science that is only as ethical as the people who are researching and implementing it, and once again, in the wake of such intense scientific advancement, what’s falling by the wayside are the emotions involved in the case-by-case scenarios.”
’Who has the right to decide what kind of life is too limited to be worth living?” That’s the question at the heart of this year’s Handle with Care. Willow, the much-longed-for daughter of Charlotte and Sean O’Keefe, is a precocious five-year-old with a love of bizarre trivia. (“The average woman consumes six pounds of lipstick in her lifetime.”) She is also sick — her bones don’t form properly due to a rare genetic illness, osteogenesis imperfecta or brittle-bone syndrome. By the time she is born, she has broken seven bones, and four more break during the delivery.
The stress — both financial and emotional — of caring for Willow leads Charlotte to file a “wrongful birth” suit against her best friend, the obstetrician who handled her pregnancy. Had Charlotte’s doctor not missed certain signs at her first prenatal ultrasound, the suit claims, Charlotte would have chosen to terminate the pregnancy rather than bring a severely disabled child into the world.
What Charlotte does is monstrous — both her husband and her older daughter, Amelia, beg her not to go forward with the suit — but Picoult does not allow her to be wholly unsympathetic. Charlotte loves her daughter so much she’ll do anything to secure a better life for her. The lawsuit means financial security: money to buy a new wheelchair, summer camp, a car specially outfitted to meet Willow’s needs. “What kind of mother would face a judge and jury, and announce that she wished her child had never existed?” Charlotte wonders. “Either the kind of mother who didn’t love her daughter very much at all. Or the kind of mother who . . . would say anything and everything if it meant [her daughter] would have a better life.”
But Charlotte is also angry at the hand she has been dealt, and the lawsuit is as much about finding someone to blame for the damage Willow’s illness has wreaked on her family as it is about winning a better life for Willow. Picoult captures well the toll that caring for a disabled child takes on a family; her own son, Jake, had to undergo eleven operations after he was diagnosed at age six with cholesteatoma, benign tumors that grow in the inner ear. Charlotte has to give up her career as a pastry chef — work she loves — to become Willow’s full-time caretaker. The family struggles to get by on Sean’s lone income. Both parents are overburdened, always rushing from one emergency to the next, aware they’re not fully meeting either daughter’s needs. “What if it was someone’s fault?” Charlotte thinks. “How could I admit to anyone — much less myself — that you were not only the most wonderful thing that had ever happened to me . . . but also the most exhausting, the most overwhelming?”
If we’re tempted to judge Charlotte harshly, Picoult suggests we look in the mirror. Charlotte is us, and Handle with Care sheds uncomfortable light on our modern expectations about parenthood: specifically, our belief that we have the right to choose which babies will be born. As Sean ruefully remarks, “People were always saying they’d love any baby that came along, but that wasn’t necessarily true. Sometimes, it really did come down to the child in question.” Indeed, Picoult notes that some 80 percent of prenatal Down syndrome diagnoses end in abortion. We might say, as one Picoult character does, that “love’s not a because, it’s a no matter what,” but our actions suggest the contrary. Charlotte personifies this confusion perfectly. “I would never have wished for an able-bodied child,” she declares, “because that child would have been someone who wasn’t you.” But moments later, she is wondering if you can “miss someone you never knew.”
How far will we go in our quest for the perfect child? Sean worries about the logic of Charlotte’s suit, what he calls its “greased slope.” “If an OB decides a kid with brittle bones shouldn’t be born, what’s next?” asks a disability-rights activist at the trial. “A prenatal test for low IQ, so you can scrap the fetus that won’t grow up and get up into Harvard?” Such a fear is not merely speculative. Amelia, Charlotte’s preteen daughter, is troubled by the way the lawsuit reduces Willow to a single trait: her impairment. Does her mother look at her and only see her flaws as well? “Was it any wonder that I found myself staring in the mirror at my disgusting face and even more disgusting body?” Amelia thinks. “My mother was going to sue a lawyer over a kid who turned out less than perfect.”
My Sister’s Keeper also focuses on a family disrupted by disease. Brian and Sara Fitzgerald are the parents of Jesse, four, and Kate, two, when Kate is diagnosed with acute promyelocytic leukemia — a rare form of cancer that resists chemotherapy and requires constantly changing treatment regimens. Without a genetically matched donor, Kate will soon die. So the Fitzgeralds — with the help of modern reproductive technology — conceive a “savior sibling” for Kate: their daughter Anna.
From the moment of her birth, Anna’s life is inextricably linked to Kate and her illness. “I’m not sick, but I might as well be,” Anna thinks. Every time Kate is admitted to the hospital, Anna ends up there as well, and she grows up thinking of herself as a mere source of spare parts for her sister: cord blood, stem cells, and bone marrow. When Kate’s kidneys fail, Anna, now 13, is drafted once more as Kate’s donor. But this time, Anna hires an attorney and sues her parents for the right to make her own medical decisions.
(Warning: There are spoilers galore in the rest of this section.) Picoult expertly untangles the various conflicts of interest — ethical, legal, and medical — involved in Anna’s case. Brian, a firefighter, knows that “the safety of the rescuer is of a higher priority than the safety of the victim,” but Anna’s well-being is never considered — not by her parents, not by the doctors who treat her, not even by the hospital bioethics committee that considers her sister’s case. Kate’s doctors are divided on whether to go ahead with the donation — Kate is so weakened by the cancer that the operation may only prolong her suffering — but no one discusses the impact it would have on the donor, Anna. She is not “the patient,” as Kate’s doctor explains at the trial. If the doctors have forgotten Anna, her parents are no better. As Julia, Anna’s court-appointed guardian ad litem and the novel’s moral center, thinks: “Traditionally, parents make decisions for a child, because presumably they are looking out for his or her best interests. But if they are blinded, instead, by the best interests of another one of their children, the system breaks down. And somewhere, underneath all the rubble, are casualties like Anna.”
Thus, for a procedure unlikely to save Kate’s life, Anna is put at risk. Her health will be compromised; the doctors tell her she’ll likely have to give up ice hockey, a sport she loves and for which she has natural talent. More worrisome to Julia is the emotional impact the surgery may have on Anna: If her kidney fails to save Kate, Anna may face a lifetime of guilt.
More broadly, Julia wonders what it is like to be a means to an end, to be conceived with a particular purpose in mind. Like Handle with Care, My Sister’s Keeper is ultimately about the quest for parental control: In the words of Anna’s lawyer, “We are all, I suppose, beholden to our parents — the question is, how much?” Sara and Brian bridle at the thought that Anna is a “designer baby” — that their love is contingent on certain traits — yet Sara herself tells Anna that “we loved you more because we knew exactly what we were getting.” The words are meant to reassure, but Anna can’t help but wonder if her mother would love her if she had turned out differently than planned. “Unlike the rest of the free world,” she thinks, “I didn’t get here by accident. And if your parents have you for a reason, then that reason better exist. Because once it’s gone, so are you.”
My Sister’s Keeper closes with one of Picoult’s signature shocker endings: Anna wins the trial only to die in a car accident. Kate, in turn, receives her kidney and is saved. Many reviewers have seen the ending as a cop-out, a way — as the Chronicle of Higher Education put it — to “circumvent the parents’ need to make a difficult moral choice.” But the ending (which is very similar to the twist in Handle with Care) reinforces the theme of control, our desire to master nature or fate through science. Sara’s natural desire to protect her children convinces her she can bend circumstances to her will. She can create one child to save the other with no negative consequences. Anna’s death helps her to understand that there are some things we can’t and shouldn’t control. Children are a gift, as Sara comes to realize: “We never have children, we receive them.”
Or, as a character in Second Glance (2003) puts it, just because an embryo is protected from contracting cystic fibrosis, “that didn’t mean it might not contract meningitis. You never knew what you were going to get. Close a door, and you’d still feel a breeze through the window.” The character speaking those lines is Meredith Oliver, a genetic diagnostician. Meredith, like Charlotte and Sara, is a mother attempting to assert control over unhappy circumstances, and she too will find that she is only creating a new and different tragedy.
Second Glance is something of a departure for Picoult — it’s a ghost story as well as a family drama. The town of Comtosook, Vt., is literally haunted by the past. Lia Beaumont, a woman murdered in the 1930s, stalks the grounds of an old, burnt-out house where a real-estate developer hopes to build a shopping center. The ghost is responsible for all kinds of strange happenings in the town, including terrifying visions experienced by Meredith’s sensitive daughter, Lucy. Unnerved, the developer hires Ross Wakeman, a paranormal investigator, whose sister is the town’s librarian.
With the help of his sister and his nephew, Ross uncovers the mystery of Lia Beaumont’s life, and with it, a dark chapter in American history. Lia was the daughter of Henry Perkins and the wife of Spencer Pike; Perkins and Pike were the scientists behind the 1930s Vermont Eugenics Project, which sought to protect Vermont’s genetic stock by ridding the state of its undesirable citizens. In 1931, Vermont became one of 33 states to enact a sterilization law, and social workers were sent out to identify candidates for sterilization: the mentally ill, the handicapped, and racial and ethnic minorities. The majority of those sterilized were members of the so-called gypsy family or of the Abenaki Indian tribe. Sterilizations were said to be “voluntary,” but often only the consent of two doctors was required: The patient, as one character explains, “didn’t always know what was best for himself.”
Although Spencer and Lia are fictional, Henry Perkins and the Vermont Eugenics Project are not. Second Glance is an attempt to understand how a supposedly civilized society can do such terrible things. What Ross and the others learn is that the eugenicists of the 1930s were not monsters, but normal people who wanted only to reduce human suffering. They were the elite, “progressive” thinkers: “doctors, lawyers, teachers, judges . . . people who truly felt that what they were doing, in the long run, was best for everyone.” One 1930s social worker is initially repulsed by the treatment of her patients, and attempts to resign. “I didn’t have the heart for a career in public welfare,” she explains. But that, the director claims, is exactly why she should stay: “So one day there would be fewer and fewer people who had to suffer.”
Like the other books, Second Glance is a warning. In an author’s note, Picoult points out that the Human Genome Project is located on the same site in Cold Spring Harbor, N.Y., as the American Eugenics Society was. Perhaps today’s genetic research is not so different from the eugenics of the 1930s. “Science was at the mercy of the people who created it,” Meredith thinks, and she begins to fear she has more in common with Henry Perkins than she thought. “No parent should have to suffer through a sick child,” she tells Ross. Like Sara, Meredith believes parents will love their children more if they know what they’re getting. But she will learn — just as Charlotte and Sara do — that love is not contingent, that children are not simply projects of our will.
If recent history is any guide, it’s a lesson we have to relearn again and again. As Ross tells Meredith, “the truth was, history repeated itself on a daily basis; mistakes were made over and over.” Fortunately, we have Jodi Picoult’s books to warn us against those mistakes and show us the human costs of our biotechnical age.
– Cheryl Miller is the editor of Doublethink magazine.