[Paleopsych] CHE: Novel Perspectives on Bioethics (letters appended)
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CHE: Novel Perspectives on Bioethics (letters appended)
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)
-------------------
Does It Make Sense to Use Fiction as a Guide to Bioethics?
The Chronicle of Higher Education, 5.7.8
http://chronicle.com/weekly/v51/i44/44b01301.htm
To the Editor:
In "Novel Perspectives on Bioethics" (The Review, May 13), Martha
Montello discusses the treatment of bioethical issues in literary
works that "lean toward science fiction" without discussing any
examples from science fiction itself, which offers interesting,
incisive considerations of bioethical concerns in abundance. Examples
include Nancy Kress's 1993 Beggars in Spain, about genetic
engineering, and Nancy Farmer's 2002 young-adult novel about cloning,
The House of the Scorpion.
These books and many other examples of science fiction -- contrary to
Montello's implication that science fiction is a lesser literature
dominated by plot and concept -- shine, like the works she discusses,
"new light onto timeless questions about what it means to be fully
human" through three-dimensional characters and well-crafted prose. As
I argue in my forthcoming book, Understanding Contemporary American
Science Fiction: The Age of Maturity, 1970-2000, the traditional
disdain for science fiction among many literary scholars should not
blind readers to its virtues -- including what it has to contribute to
discussions about how science affects our lives.
Darren Harris-Fain
Associate Professor of English
Shawnee State University
Portsmouth, Ohio
***
To the Editor:
I read with some measure of consternation Martha Montello's essay, in
which she advises those Christian fundamentalists and their opponents
who have been debating bioethical issues in the Kansas Legislature to
read more fiction and poetry in order to refine their ethical
barometers. Although the proposal is a sound one, the reasons
Professor Montello adduces -- viz., that many works of fiction, a few
of which she discusses in some detail, address bioethical issues in a
thoughtful and sensitive fashion -- are not at all compelling. In
fact, resorting to works of art to gain knowledge about how bioethical
controversies should be resolved makes Plato's decision to exile the
poets seem appealing.
Great works of art are vivid and moving, but they necessarily lack the
systematic approach and appropriately cold-blooded rationality that
other disciplines, such as ethical philosophy, possess in their best
moments. Kazuo Ishiguro's portrait of Kathy H. in Never Let Me Go may
be compelling as an aesthetic matter, but anyone who concludes that
cloning is a horrific enterprise on the strength of that portrait is
allowing an emotional reaction to a piece of science fiction to
interfere with the logical scrutiny of reality. Great literature may
be instructive, but not like this. One should not turn to Ishiguro to
discern bioethical truths any more than one would turn to
Shakespeare's history plays to learn British history.
Rather, such literature teaches us how to engage our world in a
subtler, more nuanced fashion, to make fine distinctions in lieu of
crude, categorical ones. And it cultivates in us the skill of textual
interpretation, a significant ability in a forum such as the Kansas
Legislature, where, as Montello observes, "language mattered." It
teaches those who would read biblical texts in a fundamentalist
fashion about the use of tropes and other literary devices that permit
nonliteral readings of texts and that allow the reader to get beyond
the dangerous, antipodean view that such works are either factually
true or else false.
After all, as Nietzsche explained in responding to Plato, art is the
one thing that is true because it treats appearance as appearance; its
aim is precisely not to deceive. To use art as a source of
philosophical or factual truths, as Professor Montello proposes,
therefore, is no less an abuse than the manner in which religious
conservatives seek to employ the Bible to shape their beliefs about a
world far too nuanced to be contained by its well-worn pages.
Alex Zubatov
New York
* * *
To the Editor:
I wish I could be more sanguine that the study of literature leads to
a better bioethics. Not that I'm a disbeliever in literature. I've
written two novels (that never found their way into print but that
were popular with my friends, or so they diplomatically said). ... But
contrary to her purpose, Martha Montello's tour of contemporary
fiction shows that literature takes bioethics only so far. ...
There are plenty of literary potboilers that don't help bioethics at
all, and it's an open question whether fiction overall enlightens more
than it stultifies. Montello says that fiction reveals "our common yet
deeply individual struggles to find an ethics commensurate with rapid
advances in the new science and technologies." Maybe, but there's
still a step missing: How do works of imagination improve either the
framing or the resolution of legal and policy decisions? ...
I would be better persuaded of the value of fiction and poetry to
bioethics if Montello showed how this literature actually helped
answer important questions of the day, in ways that were superior to
the answers arrived at without reference to someone's idea of the
literary canon.
Timothy F. Murphy
Professor of Philosophy in the Biomedical Sciences
College of Medicine
University of Illinois
Chicago
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