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W. French Anderson
We allow that it would be ethically appropriate to use somatic cell gene
therapy for treatment of serious disease. But what distinguishes a serious dis
ease from a “minor” disease from cultural “discomfort”?What is suffering?
What is significant suffering? Does the absence of growth hormone that
results in a growth limitation to two feet in height represent a genetic dis
ease? What about a limitation to a height of four to five feet? Each observer
might draw the lines between serious disease, minor disease, and genetic
variation differently. But all can agree that there are extreme cases that pro
duce significant suffering and premature death. Here then is where an initial
line should be drawn for determining what genes should be provided: treat
ment of serious disease.
If the position is established that only patients suffering from serious dis
eases are candidates for gene insertion, then the issues of patient selection
are no different than in other medical situations: the determination is based
on medical need within a supply and demand framework. But if the use of
gene transfer extends to allow a normal individual to acquire, for example,
a memory-enhancing gene, profound problems would result. On what basis
is the decision made to allow one individual to receive the gene but not
another: Should it go to those best able to benefit society (the smartest
already?) To those most in need (those with low intelligence? But how low?
Will enhancing memory help a mentally retarded child?)? To those chosen
by a lottery? To those who can afford to pay? As long as our society lacks a
significant consensus about these answers, the best way to make equitable
decisions in this case should be to base them on the seriousness of the
objective medical need, rather than on the personal wishes or resources of
an individual.
Discrimination can occur in many forms. If individuals are carriers of a
disease (for example, sickle cell anemia), would they be pressured to be
treated? Would they have difficulty in obtaining health insurance unless they
agreed to be treated? These are ethical issues raised also by genetic screening
and by the Human Genome project. But the concerns would become even
more troublesome if there were the possibility for “correction” by the use of
human genetic engineering.
Finally, we must face the issue of eugenics, the attempt to make heredi
tary “improvements.” The abuse of power that societies have historically
demonstrated in the pursuit of eugenic goals is well documented.7Might we
slide into a new age of eugenic thinking by starting with small “improve
ments”? It would be difficult, if not impossible, to determine where to draw
a line once enhancement engineering had begun. Therefore, gene transfer
7. See., for example, Kenneth M. Ludmerer,
Genetics and American Society
(Baltimore, Md:
Johns Hopkins University Press, 1972), and Daniel J. Kevles,
In the Name of Eugenics
(New
York: Knopf, 1985).