Alison Leonard

Seattle: Reading and Writing the City

6/12/14
Paper 2: Thematic Reading Final Draft
The Ethics of Experimental Medicine
Modern medicine has made incredible strides toward improving lives
by eradicating infectious diseases, repairing damaged joints and organs, and
even keeping cancer at bay, but in the end we still all succumb to aging and
death. In his novel Long for This World, Michael Byers embodies our fear
death in the fictitious disease Hickman syndrome, which causes children to
die of old age at fourteen. In the novel, Dr. Henry Moss stumbles upon a
possible cure for Hickman and intends to develop it as a new therapy, but
when faced with the opportunity to save his favorite patient, William Durbin,
he must choose whether or not to flaunt international regulations by
bypassing clinical trails. Although William is a compelling character that both
Henry and readers of the novel want to save, Henrys actions as a doctor are
irresponsible and systematically damaging to the scientific community.
Henrys love for his patient and his fixation on saving him at all costs lead
him to take uncalled for risks. Henrys gambling both detracts from the
potential of his scientific breakthrough to reach its full potential and is unfair
to William, his family, and other patients like him. In an age when our
medical knowledge sometimes outpaces our ability to apply it wisely, Byers
uses this novel to question the role of scientific breakthroughs and cuttingedge therapies in treating terminal patients. Through this he explores the
ethics of how a doctors personal feelings can impinge upon his ability to
practice medicine.
After discovering a protein that may cure Hickman, Henry is faced with
the moral dilemma of choosing between saving Williams life and respecting
the scientific protocols forbidding human trials without proof of safety.
Unauthorized human experimentation is, utterly and totally immoral, as far
beyond the bounds of acceptable scientific and medical practice as he could

go (Byers 114). In addition to being morally wrong as a scientist, Henry

knows that he is also risking his job and his own familys security. He knows
that, if he was discovered, hed be fired, and hed never get a grant again.
Never get a job as an active academic researcher. Not in this country (Byers
114). However, the lure of potentially saving Williams life is also very
compelling. William is 14 years old, the same age as Henrys son Darren, and
after suffering from a mild heart attack he is left in the pediatric ICU with
under 6 months to live (Byers 83). Henrys trusted assistant, Gretl, agrees
that, Medicallyits a wonderful thing. Theres nothing else we can doIts
a chance (Byers 124). As a doctor, Henry has dedicated his life to improving
the lives of his sick charges, and refusing to act to save Williams life when
he has the means feels just as morally repugnant as breaking the human
experimentation protocols. After choosing to try and save William, Henry
looks back and reflects, But what man would have done anything else in his
position? If [I] had said no to William, to [his parents Bernie and Lillian], could
[I] have stood here in good conscience and felt [I] was a decent man? No, [I]
didnt think so (Byers 335). Henrys discovery places him in the very difficult
position of choosing between options that can both be justified as the right
decision, one by the moral code of the doctor and one by the moral code of
the compassionate human being.
In the face of Williams imminent death, Henrys weakness is that he
lets his love for his patient override his good judgment as his doctor. Henry
studies Hickman patients from around the world, but since William is from
Seattle Henry has the unique opportunity to get to know him as both a
patient and a person. This relationship with William and his parents Bernie
and Lillian causes Henry to care more about Williams happiness than about
his own responsibility as a doctor. A major contributor to this indiscretion is
that William reminds Henry of his own children, especially his son Darren
who is Williams age. Henry describes watching a 9 year old Darren play
soccer on a cold November day, when, suddenly he would be thinking of
William again, even as he stood there with his wife, appearing in every way

to be a normal, attentive father; it happened all the time (Byers 43). Over
the years of watching William grow up he has come to care about him as a
son rather than as a patient, and so Henry acts as a desperate father to save
him. He thinks, He loved William, loved him helplessly as he loved his own
childrenHe would try to save William, no matter what the risks turned out
to be (Byers 83). In her essay The Paradox of Family Relations, Coreen Yuen
argues that Henrys love for William is so strong that it even comes to
overshadow his love from his own son Darren. Yuen points out that at the
planetarium Henry hugs William but, he had not embraced his own son, and
Darren had watched and noted that (Byers 296). Yuens argument further
emphasizes that Henrys intense paternal feelings for William are crossing
the lines of acceptable behavior for a physician. The sense that Henrys
judgment has been compromised echoes throughout the rest of the novel,
culminating with Henry recklessly injecting himself with the miracle
compound.
While he intends only the best for William, Henrys actions are still
dishonest and dangerous to the integrity of the medical and scientific
communities. In order to deliver his new drug to William before it is too late,
Henry skips over years of tests and clinical trials designed to verify that the
drug is safe for human use. Isolating the compound is not enough; then
came the difficult part: determining what the new enzymes did alone, what
they did in concert with other enzymes within the body (Byers 81). Much of
this information is gathered through experiments in rodents, so human
experimentation would come only after the protocols were established, which
in the normal course of things took years and years (Byers 81). Henry
knows that by bypassing the testing phase he is giving William a drug with
unknown consequences. At best it may give William more time, but it could
just as easily kill him instantly. Just before he injects William, he runs through
the worst in his head, thinking, Even if it starts to work, it could kill him by
speeding up his heart rate before it repairs his aortaI mean if it doesnt fall
over him like a magic cloak, its going to do some kind of damage, isnt it?

(Byers 123). The approval process by the Institutional Review Board is

designed to protect patients by preventing this launching into the unknown.
William will die without the treatment, but they turn people down all the
time for things like this, and patients die because of it, but thats how you do
science (Byers 86). Findings published in scientific journals are rigorously
scrutinized in the peer review process to ensure that the conclusions drawn
are appropriately supported by the data. This review is vital because it
ensures that reputable journals only publish quality work. By blatantly
violating the standards of the review process, Henrys actions undermine the
integrity of scientific discovery and discredit the good intentions of honest
scientists. In the novel Henry is a hero to readers for doing anything he can
to save William, but if the drug had forced William to die a sudden and
painful death, then scientists would be outraged and readers would have
scorned Henry as the criminal he is.
Ultimately those who stand the most to lose from Henrys
experimentation are William and his family. By convincing Williams parents
to accept an experimental drug with no certain outcome, Henry builds up
their hopes for something that is likely to never come true. Williams primary
doctor, Charlie Calens, reacts to Henrys confession, You dont think
Williams going to die anyway? You dont think hes going to be seduced into
who knows what kind of hope? And the parents? Its cruel (169). In his
weakened condition William is unlikely to survive much longer even with a
miracle cure, and Henry launches this last ditch effort, against everything he
has learned in his medical training, simply because he cant bear to face the
inevitable.
Long for This World is a touching novel that forces its main characters
to make difficult choices about life and death. However, the sentimentality of
the novel and the heartbreaking nature of watching a child die still do not
excuse Henrys actions as a doctor entrusted with Williams care. Henry was
too close to William and cared too much about him to make the right
decisions as his doctor, and because of this William and his family were

placed under the unnecessary stress of false hope and potential disaster.
Scientific discovery depends on rigorous testing and peer review to tease out
the complicated interactions between the body and foreign substances.
Henrys rash choice to use a drug that was not fully tested ignores important
checkpoints designed to protect patients and ensure quality science, and can
only be the actions of a desperate man. The drive to exhaust all options of
patient care is strong in emergency rooms all over the world, as friends and
relatives want desperately to hear better news. Ultimately, we as a society
must learn when to draw the line and spare our loved ones unnecessary pain
and heartache.
Works Cited
Byers, Michael. Long for This World. Boston: Houghton Mifflin, 2003. Print.
Yuen, Coreen. The Paradox of Family Relations