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Doctors like to imagine that the therapeutic imperative and the experimental imperative are one and the same. On the contrary. They are almost always in conflict. At the extreme are the notorious cases in which the patient is actually sacrificed on the altar of science: the Tuskegee experiment, in which a group of black men with syphilis were deliberately left untreated for 40 years; the Willowbrook experiment, in which retarded children were injected with hepatitis virus; and the Brooklyn study in which elderly patients were injected with live cancer cells. Loma Linda was at the other extreme. Here, far from being at war with the therapeutic, the experimental was almost identical with it. But not quite. The baboon heart was ever so slightly more experimental, more useful to science (or so the doctors thought), more risky for Baby Fae. If it were your child, and you had two hearts available, and you cared not a whit for science (perhaps even if you cared quite a bit for science), you would choose the human heart.
The Loma Linda doctors did not. Hence the unease. One does not have to impute venal motives—a desire for glory or a lust for publicity—to wonder about the ethics of the choice. The motive was science, the research imperative. Priority was accorded to the claims of the future, of children not yet stricken, not yet even born.
Is that wrong?
Civilization hangs on the Kantian principle that human beings are to be treated as ends and not means. So much depends on that principle because there is no crime that cannot be, that has not been, committed in the name of the future against those who inhabit the present. Medical experimentation, which invokes the claims of the future, necessarily turns people into means. That is why the Nuremberg Code on human experimentation (established after World War II in reaction to the ghastly Nazi experiments on prisoners) declares that for research to be ethical the subject must give consent. The person is violated if it is unwillingly—even if only uncomprehendingly—used for the benefit of others.
But not if it volunteers, and thus, in effect, joins the research enterprise. Consent is the crucial event in the transition from therapy to experiment. It turns what would otherwise be technological barbarism into humane science. Consent suspends the Hippocratic injunction "First, do no harm." Moreover, it redeems not only the researcher but the researched. To be used by others is to be degraded; to give oneself to others is to be elevated. Indeed, consciously to make one's life the instrument of some higher purpose is the essence of the idea of service. If Barney Clark decides to dedicate his last days to the service of humanity, then—and only then—may we operate.