Dunafon is disturbed by something she's just read. An article
on the promise of gene therapy, published in the New York Times
of all places, has gotten everything wrong.
genes are not 'replaced,'" the doctoral student points
out. "The new genes are added to the cells, where they
function alongside the already existing genes. The article also
suggests that gene therapy is a quick cure to all problems,
and this is wrong on a number of levels."
knowledge of how gene therapy works-and how it doesn't-stems
from years of research. Like many Chicago scholars, her understanding
of the subject is far more advanced than what's presented in
the popular press.
might surmise that Dunafon is at the U of C to study such things
as chloride ions and viral vectors, but in fact she's writing
a dissertation in Social Thought on Sigmund Freud and Bulgarian-born
author Elias Canetti. Her scientific investigations are not
based on whim or the tendency of dissertation writers to procrastinate.
Dunafon has cystic fibrosis, a chronic, hereditary condition
with which she was diagnosed at age 12. In cystic fibrosis,
a defective gene prevents adequate production of certain proteins,
resulting in a thick buildup of mucus in the lungs and, more
often than not, problems in the digestive system. Dunafon seeks
to understand the science behind the disease by participating
in gene-therapy clinical trials that aim to improve lung function
in those with CF.
few years ago she took part in her first trial, a short study
conducted by the National Institutes of Health. Just after her
Social Thought Fundamentals exam in summer 2000, she made eight
or nine trips to Johns Hopkins Medical Center in Baltimore for
the first phase of another trial conducted by a pharmaceutical
company. Now participating in phase two, at Hopkins Dunafon
has earned a reputation as the patient who asks all the questions.
She does not believe such studies will be the source of a cure-a
hereditary disease can never be eradicated-but she is interested
in learning how scientists think about her disease.
devotes about three hours a day to inhaling medications, exercising,
and loosening the mucus in her lungs. The disease also played
a role in her intellectual life as she zeroed in on a dissertation
topic. In examining the relationship among sickness, madness,
and spirituality, Dunafon fixed upon Freud's Moses and Monotheism
and Canetti's Crowds and Power. While Freud examines
the character of crowds as a whole, she says, Canetti looks
at how individuals navigate crowds to survive.
of asking what it means to be human, Canetti believes, is asking
what it means to survive someone else. This is a question Dunafon
says she understands "keenly." Not only is she five
years past the average survival age of a person with cystic
fibrosis, but she has outlived her friend Karen DiNal, AM'91,
a Chicago doctoral student in English who also had CF and who
died in August 2000. How, Dunafon asks herself both privately
and when reading Canetti, do I accept that? How does one survive
others and continue in a meaningful way? In Canetti she seeks
a nuanced and resonant discussion of survival to help resolve
37, Dunafon is in fairly good shape. Thin and soft-spoken, she
barely looks her age. When serious, she sometimes falls prey
to a stutter; when laughing, her eyes tent up into bright triangles.
She maintains that she is not interested in navel gazing, but
rather research into the human condition-that though her experience
with cystic fibrosis is unique to her, there may be something
others can take away from it. "I'm trying to bring my understanding
of what it is about being sick, which is a very personal thing,
to the academic experience," she says. "Whether or
not I succeed is something else."