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Infants, who can decide nothing, are the difficult case. (If Baby Fae had volunteered for her operation, the ethical questions would evaporate.) Since infants are incapable of giving consent, the parents do so on their behalf. In Baby Fae's case what kind of consent did they give? If her parents thought that the operation might save their child (i.e., that it was therapeutic), they were misled. There was no scientific evidence to support that claim. The longest previous human survival with a heart xenograft was 3½ days. (Baby Fae lived 17 more.) The longest animal survival in Dr. Bailey's own studies was 165 days.
If, on the other hand, the parents had been told that the purpose was to test a procedure that might help other babies in the future (i.e., that it was experimental), what right did they have to volunteer a child—even their child—to suffer on behalf of humanity?
After Baby Fae died, it was argued, retroactively, that in fact the operation reduced her suffering, that she was pink and breathing instead of blue and gasping. Perhaps. But the cameras were brought in only when she was well. She was not seen when not doing well: enduring respirators, cannulas, injections, stitches, arrhythmias, uremia. Was this really less agonal than a natural death, which would have come mercifully weeks earlier?
No. Baby Fae was a means, a conscripted means, to a noble end. This experiment was undertaken to reduce not her suffering, but, perhaps some day, that of others. But is that really wrong? Don't the suffering babies of the future have any claim on us? How do we reconcile the need to advance our knowledge through research, with the injunction against using innocents for our own ends?
Two serious men have attempted an answer. One is Jonas Salk. "When you inoculate children with a polio vaccine," he said of his early clinical tests, "you don't sleep well for two or three months." So Salk tested the vaccine on himself, his wife and his own children. This is an extraordinary response. It certainly could not have improved his sleep. It did not even solve the ethical dilemma. After all, the Salk children were put at risk, and they were no less innocent than the rest. But by involving his own kin (and himself), Salk arranged to suffer with the others if his science failed. He crossed the line that separates user from used. By joining his fate to the used, he did not so much solve the ethical problem as turn it, heroically, into an existential one.