January 27, 2004
A: FROM MENTOR JOAN LUSK IN RI
Gene therapy is so new that it's not possible to reach a definitive
conclusion about its costs (safety and financial) versus benefits.
You're right that there have been some bad side effects - including
death - in early tests. We've become so used to the safe practice of
medicine that any ill effects are unacceptable to us; and that's our
privilege, sitting here with the benefits (vaccines, drugs) of our
predecessors courage to experiment on themselves (and the arrogance
to experiment on others). When we're as safe and healthy overall as
we are now, risks become more apparent; in a more dangerous past age
when far more people died young the risks just added to a high
background level of danger and the potential benefits were huge.

I think that many objections to genetic engineering are more
philosophical than scientific. Is it "right" to change a person's
genetic makeup? Even more disturbing, is it right to change the germ
line, the gene we pass on to the next generation? A great many kids
have their teeth straightened by braces and no one feels that's
tinkering too much with biology; but if we identify a gene for
straighter teeth that could be inserted into eggs or sperm, would
that be right? Could we predict potential side effects? Animals
have been bred for specific traits for thousands of years (look at
the variety of dogs now) but if we created a golden retriever
look-alike from a dachshund by genetic engineering would that be a
qualitatively different animal? If we could cure certain dog breeds
of their common faults - bad hip joints, a tendency to bite or bark -
by gene therapy, should we do it?

In the technical dimension, we need better understanding of the
control of genes and how changes in the overall genome might affect
their expression indirectly. In the moral dimension, we have to
decide on what we value and why. We have to think clearly about how
much we have already altered plants and animals by ordinary breeding
and whether genetic engineering is just a more precise way of doing
the same old thing or a qualitatively new technology. The catch-22
is that our technical understanding would increase far more rapidly
if we do some experiments, and we can't know exactly how useful that
knowledge would be. Intellectually, of course, it would be very
satisfying.