[Paleopsych] CHE: Novel Perspectives on Bioethics

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Novel Perspectives on Bioethics
The Chronicle of Higher Education, 5.5.13
http://chronicle.com/weekly/v51/i36/36b00601.htm

    By MARTHA MONTELLO

    On March 16, the Kansas Legislature heatedly debated a bill that would
    criminalize all stem-cell research in the state. Evangelical-Christian
    politicians and conservative lawmakers argued with molecular
    biologists and physicians from the University of Kansas' medical
    school about the morality of therapeutic cloning.

    Up against a substantial audience of vocal religious conservatives,
    William B. Neaves, CEO and president of the Stowers Institute for
    Medical Research, a large, privately financed biomedical-research
    facility in Kansas City, began his impassioned defense of the new
    research by giving his credentials as "a born-again Christian for 30
    years." Barbara Atkinson, executive vice chancellor of the University
    of Kansas Medical Center, tried to articulate the difference between
    "a clump of cells in a petri dish" and what several hostile
    representatives repeatedly interrupted to insist is "early human
    life." Clearly, in this forum, language mattered. Each word carried
    wagonloads of moral resonance.

    I am a literature professor. I was at the hearing because I am also
    chairwoman of the pediatric-ethics committee at the University of
    Kansas Medical Center. I listened to the debates get more and more
    heated as the positions got thinner and more polarized, and I kept
    thinking that these scientists and lawmakers needed to read more
    fiction and poetry. Leon R. Kass, chairman of the President's Council
    on Bioethics, apparently feels the same way. He opened the council's
    first session by asking members to read Hawthorne's story "The
    Birthmark,"and he has since published an anthology of literature and
    poetry about bioethics issues.

    The fight in Kansas (the bill was not put to a vote) is in some ways a
    microcosm of what has been happening around the country. From
    Kevorkian to Schiavo, cloning to antidepressants, issues of bioethics
    increasingly underlie controversies that dominate public and political
    discussion. Decisions about stem-cell research, end-of-life choices,
    organ transplantation, and mind- and body-enhancing drugs, among
    others, have become flash points for front-page news day after day. At
    the same time, some good literary narratives have emerged over the
    past few years that reveal our common yet deeply individual struggles
    to find an ethics commensurate with rapid advances in the new science
    and technologies.

    Kazuo Ishiguro's elegiac, disturbing new novel, Never Let Me Go,
    re-imagines our world in a strange, haunting tale of mystery, horror,
    love, and loss. Set in "England, 1990s," the story is pseudohistorical
    fiction with a hazy aura of scientific experimentation. A typical
    Ishiguro narrator, Kathy H. looks back on her first three decades,
    trying to puzzle out their meaning and discern the vague menace of
    what lies ahead. In intricate detail she sifts through her years at
    Hailsham, an apparently idyllic, if isolated, British boarding school,
    "in a smooth hollow with fields rising on all sides." Kathy and the
    other students were nurtured by watchful teachers and "guardians," who
    gave them weekly medical checks, warned them about the dangers of
    smoking, and monitored their athletics triumphs and adolescent
    struggles. Sheltered and protected, she and her friends Ruth and Tommy
    always knew that they were somehow special, that their well-being was
    important to the society somewhere outside, although they understood
    that they would never belong there.

    From the opening pages, a disturbing abnormality permeates their
    enclosed world. While the events at Hailsham are almost absurdly
    trivial -- Tommy is taunted on the soccer field, Laura gets caught
    running through the rhubarb garden, Kathy loses a favorite music tape
    -- whispered secrets pass among guardians and teachers, and the
    atmosphere is ominous -- as Kathy puts it, "troubling and strange."
    The children have no families, no surnames, no possessions but
    castoffs -- other people's junk. Told with a cool dispassion through a
    mist of hints, intuitions, and guesses, Kathy's memories gradually
    lift the veil on a horrifying reality: These children were cloned,
    created solely to become organ donors. Once they leave Hailsham (with
    its Dickensian reverberations of Havisham, that ghostly abuser of
    children) they will become "caregivers," then "donors," and if they
    live to make their "fourth donation," will "complete." The coded
    language that Kathy has learned to describe her fate flattens the
    unthinkable and renders it almost ordinary, simply what is, so
    bloodlessly that it heightens our sense of astonishment.

    What makes these doomed clones so odd is that they never try to escape
    their fate. Almost passive, they move in a fog of self-reinforced
    ignorance, resigned to the deadly destiny for which they have been
    created. However, in a dramatic scene near the end of the novel, Kathy
    and Tommy do try to discover, from one of the high-minded ladies who
    designed Hailsham, if a temporary "deferral" is possible. It is too
    late for any of them now, the woman finally divulges. Once the clones
    were created, years ago during a time of rapid scientific
    breakthroughs, their donations became the necessary means of curing
    previously incurable conditions. Society has become dependent on them.
    Now there is no turning back.The only way people can accept the
    program is to believe that these children are not fully human.
    Although "there were arguments" when the program began, she tells
    them, people's primary concern now is that their own family members
    not die from cancer, heart disease, diabetes, or motor-neuron
    diseases. People outside prefer to believe that the transplanted
    organs come from nowhere, or at least from beings less than human.

    Readers of Ishiguro's fiction will recognize his mastery in creating
    characters psychologically maimed by an eerie atrocity. From his debut
    novel, A Pale View of Hills (Putnam, 1982), Ishiguro's approach to
    horror has been oblique, restrained, and enigmatic. The war-ravaged
    widow from Nagasaki in that work presages the repressed English butler
    of The Remains of the Day (Random House, 1990) and Kathy herself, all
    long-suffering victims with wasted lives whose sense of obligation
    robs them of happiness. Their emotions reined in, their sight
    obscured, they are subject to wistful landscapes, long journeys, and a
    feeling of being far from the possibility of home and belonging.

    Never Let Me Go, however, ventures onto new terrain for Ishiguro by
    situating itself within current controversies about scientific
    research. Taking on some of the moral arguments about genetic
    engineering, the novel inevitably calls into question whether such
    fiction adds to the debates or clouds them -- and whether serious
    fiction about bioethics is enriched by the currency of its topic or
    hampered by it. Here Ishiguro's novel joins company with others that
    are centered in contemporary bioethics issues and might be considered
    a genre of their own.

    A decade ago,
    Doris Betts penetrated the intricate emotions around living donors'
    organ transplantation in her exquisitely rendered Souls Raised From
    the Dead. The novel offered a human dimension and nuanced depth to
    this area of medical-ethics deliberations, which were making headline
    news. In Betts's story, a dying young daughter needs as close a match
    as possible for a new kidney. Her parents face complexities and
    contradictions behind informed consent and true autonomy that are far
    more subtle, wrenching, and real than any medical document or
    philosophy-journal article can render.

    Betts does justice to the medical and moral questions surrounding
    decisions that physicians, patients, and families must make regarding
    potential organ donations. What makes the book so compelling, though,
    is its focus on the various and often divergent emotional strategies
    that parents and children use to cope with fear, sacrifice, and
    impending loss. The 13-year-old Mary Grace, her parents, and
    grandparents reveal themselves as fully rounded, noninterchangeable
    human beings who come to their decisions and moral understandings over
    time, within their own unique personal histories and relationships
    with each other.

    As the therapeutic possibilities of transplant surgery were breaking
    new ground in hospitals across the country, surgeons, families, and
    hospital ethics committees grappled with dilemmas about how to make
    good choices between the medical dictum to "do no harm" and the
    ethical responsibility to honor patients' sovereignty over their own
    bodies. Betts's novel captured the difficulty of doing the right thing
    for families enduring often inexpressible suffering: How much
    sacrifice can we expect of one family member to save another?

    The ethical complexities regarding organ donations, and particularly
    the dilemmas associated with decisions to conceive children as donors,
    are escalating. Four years ago The New York Times reported on two
    families who each conceived a child to save the life of another one.
    Fanconi anemia causes bone-marrow failure and eventually leukemia and
    other kinds of cancer. Children born with the disease rarely live past
    early childhood. Their best chance of survival comes from a
    bone-marrow transplant from a perfectly matched sibling. Many Fanconi
    parents have conceived another child in the hope that luck would give
    them an ideal genetic match. These two couples, however, became the
    first to use new reproductive technologies to select from embryos
    resulting from in vitro fertilization, so they could be certain that
    this second baby would be a perfect match. When the article appeared
    in the Times, many people wondered if it is wrong to create a child
    for "spare parts." News reports conjured up fears of "Frankenstein
    medicine." State and federal legislatures threatened laws to ban
    research using embryos.

    A fictional version of this dilemma appears in Jodi Picoult's novel My
    Sister's Keeper. Picoult, a novelist drawn to such charged topics as
    teen suicide and statutory rape, takes up this bioethics narrative of
    parents desperate to save a sick child through the promise of genetic
    engineering. Conceived in that way, Anna Fitzgerald has served since
    her birth as the perfectly matched donor for her sister, Kate, who has
    leukemia, supplying stem cells, bone marrow, and blood whenever
    needed. Now, though, as her sister's organs begin to fail, the feisty
    Anna balks when she is expected to donate a kidney. Through
    alternating points of view, Picoult exposes the family's moral,
    emotional, and legal dilemmas, asking if it can be right to use -- and
    perhaps sacrifice -- one child to save the life of another.

    The story draws the reader in with its interesting premise -- one
    sister's vital needs pitted against the other's -- but ultimately
    disintegrates within a melodramatic plot that strands its
    underdeveloped characters. Why is the girls' mother so blind and deaf
    to Anna's misgivings about her role as donor? How can we possibly
    believe the contrived ending, which circumvents the parents' need to
    make a difficult moral choice? Ultimately the novel trivializes what
    deserves to be portrayed as a profoundly painful Sophie's choice,
    using the contentious bioethics issue as grist for a kind of formulaic
    writing.

    While authors like Betts and Picoult have examined ethical dilemmas of
    the new science in a style that might be called realistic family
    drama, others lean toward science fiction, imagining dystopian futures
    that are chillingly based on the present. Often prescient, they
    reflect our unarticulated fears, mirroring our rising anxiety about
    where we are going and who we are becoming. In addressing concerns
    about cloning, artificial reproduction, and organ donation, these
    novels join an even broader, older genre, the dystopian novels of the
    biological revolution.

    In 1987 Walker Percy published The Thanatos Syndrome, a scathing
    fictional exploration of what the then-new psychotropic drugs might
    mean to our understanding of being human. In this last and darkest
    novel by the physician-writer, the psychiatrist Tom More stumbles on a
    scheme to improve human behavior by adding heavy sodium to the water
    supply. After all, the schemers argue, what fluoride has done for oral
    hygiene, we might do for crime, disease, depression, and poor memory!
    More is intrigued but ultimately aghast at the consequences: humans
    reduced to lusty apes with no discernible soul or even
    self-consciousness.

    Percy cleverly captures many of our qualms about such enhancement
    therapies in a fast-paced plot that reads like a thriller. Many
    readers, however, feel that this sixth and final novel is the least
    compelling of Percy's oeuvre, emphasizing his moral outrage over the
    excesses of science at the expense of a protagonist's spiritual and
    emotional journey that had previously been the hallmark of his highly
    acclaimed fiction.

    With less dark humor but equal verve, Margaret Atwood's Oryx and Crake
    chronicles the creation of a would-be paradise shaped and then
    obliterated by genetic manipulation. Echoes of her earlier best seller
    The Handmaid's Tale (Houghton Mifflin, 1986) reverberate through this
    postapocalyptic world set in an indeterminate future, where Snowman,
    the proverbial last man alive, describes how the primal landscape came
    to be after the evisceration of bioengineering gone awry. A modern-day
    Robinson Crusoe, Snowman is marooned on a parched beach, stranded
    between the polluted water and a chemical wasteland that has been
    stripped of humankind by a virulent plague. Once he melts away, even
    the vague memories of what was will have disappeared.

    As in other works of science fiction, while its plot complications
    drive the narrative, its powerful conceptual framework dominates the
    stage. For all it lacks in character complexity and realistic
    psychological motivations, this 17th book of Atwood's fiction has a
    captivating Swiftian moral energy, announced in the opening quotation,
    from Gulliver's Travels: "My principal design was to inform you, and
    not to amuse you."Readers, however, might wish that Atwood had made a
    stronger effort to amuse us. Her ability to sustain our interest is
    challenged by the story's unremitting bleakness and the lack of real
    moral depth to its few characters.

    Even with its weaknesses, Atwood's is a powerful cautionary tale,
    similar in some ways to Caryl Churchill's inventive play A Number
    (2002). That drama is constructed of a series of dialogues in which a
    son confronts his father (named Salter) with the news that he is one
    of "a number" of clones (all named Bernard). Years ago, grieving the
    death of his wife, Salter was left to raise a difficult son, lost to
    him in some deep way, whom he finally put into "care." Sometime later,
    wanting a replacement for the lost son, he had the boy cloned. Without
    his knowledge, 19 others were created, too. Now Salter hears not only
    the emotional pain and anger of his original troubled son, but also
    the harrowing psychological struggles of several of the cloned
    Bernards. Salter responds with a mix of anguish and resignation as he
    faces the consequences of decisions he once made without much thought.
    This strange play winds through an ethical maze as each of the
    characters desperately tries to come to some livable terms with what
    genetic engineering has wrought.

    The drama is inventive in both its staccato elliptical dialogues and
    its sheer number of existential and ethical ideas. In the end, though,
    the characters never emerge as human, never engage us sufficiently to
    make us care about their ordeals with selfhood and love. When Salter
    says to one of the cloned Bernards, "What they've done they've damaged
    your uniqueness, weakened your identity," it is difficult to believe
    that they were ever capable of possessing either.

    Although Churchill's nightmare may seem especially odd, her tale of
    violence, deception, and loss resonates with those of Betts, Ishiguro,
    and Picoult. What if you might lose your child? If the means were
    available, would you take any chance, do anything, to save her? Or, if
    lost to you, to bring him back? All of these stories have in common
    their underlying questions about where bioengineering is leading us,
    what kinds of choices it asks us to make, and where the true costs and
    benefits lie. What makes the stories different from other forms of
    ethical inquiry is their narrative form, their way of knowing as
    literature.

    John Gardner reminds us that novels are a form of moral laboratory. In
    the pages of well-written fiction, we explore the way a unique human
    being in a certain set of circumstance makes moral decisions and lives
    out their consequences.

    Some of the novels being written now offer valuable cautionary tales
    about what is at stake in our current forays into new science and
    technology, asking us, as Ishiguro does in Never Let Me Go, What is
    immutable? What endures? What is essential about being human? Where
    does the essential core of identity lie? Does it derive from nature or
    nurture, from our environment or genetics?

    But the best go further. As Ishiguro's does, they take the bioethics
    issue as a fundamental moral challenge. Instead of using an aspect of
    bioethics as an engine to drive the plot, some authors succeed in
    using it as a prism that shines new light onto timeless questions
    about what it means to be fully human.

    At its heart, Ishiguro's tale has very little to do with the specific
    current controversies over cloning or genetic engineering or organ
    transplantation, any more than The Remains of the Day has to do with
    butlering or A Pale View of Hills has to do with surviving the atomic
    bomb. By the end of the novel, we discover that Never Let Me Go is, if
    cautionary, also subtler and more subversive than we suspected.

    Tommy and Ruth are already gone, and Kathy herself is ready to begin
    the "donations" that will lead to her own "completion." During one of
    her long road trips, she stops the car for "the only indulgent thing"
    she's ever done in a life defined by duty and "what we're supposed to
    be doing." Looking out over an empty plowed field, just this once she
    allows herself to feel an inkling of what she's lost and all she will
    never have.

    At this moment, we realize ourselves in Kathy, and we see her
    foreshortened and stunted life as not so very different from our own.
    The biological revolution's greatest surprise of all may be that its
    dilemmas are not really new. Instead, it may simply deepen the ones
    we've always faced about how to find meaning in our own lives and the
    lives of others.

    Martha Montello is an associate professor in the department of history
    and philosophy of medicine and director of the Writing Resource Center
    in the School of Medicine at the University of Kansas. She also
    lectures on literature and ethics at the Harvard-MIT Division of
    Health Sciences & Technology, and co-edited Stories Matter: The Role
    of Narrative in Medical Ethics (Routledge, 2002).

    WORKS DISCUSSED IN THIS ESSAY

    My Sister's Keeper, by Jodi Picoult (Atria, 2004)

    Never Let Me Go, by Kazuo Ishiguro (Knopf, 2005)

    A Number, by Caryl Churchill (a 2002 play published by Theatre
    Communications Group in 2003)

    Oryx and Crake, by Margaret Atwood (Nan A. Talese, 2003)

    Souls Raised From the Dead, by Doris Betts (Knopf, 1994)

    The Thanatos Syndrome, by Walker Percy (Farrar, Straus and Giroux,
    1987)