No one knows yet whether this hunch is right. Gouras and his
Swedish colleagues have found that rejection of fetal RPE cells
can occur months down the road. Moreover, slight differences in
approach between Gouras' team and Ernest's may or may not prove
to be significant. "It's an experiment," says surgeon Patel.
"That's all it is. What we're trying to find out is whether
there's a rationale for going to a larger study."
From the beginning, Ernest and his colleagues were also worried
about the explosive ethical questions raised by the use of fetal
tissue. Very early on, Ernest approached Dr. Mark Siegler,
director of the University of Chicago's MacLean Center for
Clinical Medical Ethics, for advice. As Siegler and many others
saw it, there were no insurmountable barriers to the use of
fetal tissue for medical purposes. After all, organs and tissue
from brain-dead children and adults are donated for
transplantation all the time. And while such deaths are tragic,
they are caused not in order to obtain the organs but by events,
such as automobile accidents, over which transplant teams have
no control. Abortion, advised Siegler, could be viewed as
another such tragic event.
Even more unsettling for Ernest has been the selection of
appropriate patients. The first patient, of course, had to be
someone in an advanced stage of the disease whom an experimental
treatment could not harm and would perhaps help. "The problem
is, patients with macular degeneration are desperate," Ernest
observes, "and they are willing to let me do anything I want if
I hold out any hope at all." Scanning his patient list, looking
for people who were medically sophisticated enough to understand
the trade-off of risks and benefits, Ernest almost immediately
selected 80-year-old Pearl Van Vliet, a volunteer at the
hospital for more than 20 years. Van Vliet, who is deeply
religious and has always considered herself to be pro-life,
sought advice from doctors in her own family as well as from her
pastor and the congregation of the Calvin Christian Reformed
Church of Oak Lawn, Ill. Everyone encouraged her to go ahead.
The operation on Van Vliet's eye went smoothly, but the
aftermath was a bit rockier. A right-to-life group protested
outside the University of Chicago Medical Center. Critical
letters and phone calls flooded into Ernest's office. To one
letter decrying his use of fetal tissue, Ernest responded, "I
can only say I agree with you about the tragedy of abortion.
[But] the use of human tissue obtained after death for
transplantation has been a good thing in medicine, and I believe
that with care and understanding, it will continue to be."
Conscientious and compassionate are words that colleagues use to
describe Ernest--old-fashioned virtues that no doubt came from
his youth in Sycamore, Ill., where his father was a postal
carrier and he was a high school football star. His fascination
with the eye, he says, began when he was a senior at
Northwestern University and opted to do an honors paper on
embryological development. "I went to the card catalog and
opened up the file drawer, and the cards on embryology went the
length of the drawer. In desperation, I narrowed the topic to
the smallest part of the body I could think of, the eye."
As a research physician, Ernest straddles the twin worlds of
biomedical research and clinical practice. His drive to explore
new medical frontiers, he says, is rooted in a sense of urgency
that comes from seeing 100 patients a week, many of them
desperate and despondent. Indeed, when patients with macular
degeneration complain about not being able to read, Ernest
invariably thinks of his father and his love of reading. "My
father was 93 when he died, and for the last 10 years of his
life he was unable to read. We all take the ability to read for
granted until it's gone."
Though macular degeneration has left an indelible mark on
Ernest's life, there is no way of knowing whether it will be his
team or some other group of researchers that will make the
critical breakthroughs to alleviate the disease. When pioneering
new treatments, observes Ernest, it is always prudent to expect
the unexpected. "You often start out in one direction, but you
end up going in another."
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