Friday, February 23, 2001

Medical morality

Is it ever okay to sacrifice the life of a child for the greater good? For the good of other children in general? For the good of other children in the same hospital? Is it ever okay to give some babies a placebo instead of a life-saving drug, knowing that without the drug they might die? Is it okay if they never had a chance of getting the drug anyway? Is it okay if their death is the only way for other babies to live?

These are the moral questions posed by a proposed drug study currently under consideration for FDA approval. The drug under examination is a new version of the surfactant sprayed into the lungs of premature babies to prevent Respiratory Distress Syndrome, a potentially fatal affliction to which preemies' underdeveloped lungs are susceptible. To test it on U.S. babies, who have access to existing versions of the drug, would be clearly unethical; it would mean depriving a baby of a life-saving drug he would otherwise have.

Yet the drug needs testing. And testing with a placebo control group is the fastest, most efficient way to do this. The drug company, feeling its new product to be superior and safer than existing versions -- and, undoubtedly, eager to start cashing in on its research -- feels time is of the essence. What to do?

The solution they hit upon falls somewhere between altruism and oppression. Why not do the testing in a poor Latin American country -- say, Ecuador -- that can't afford the existing drugs. Babies in hospitals there do not get their life-saving lung spray. And so giving it to them, for testing purposes, would be an enormous boon. It would literally be giving life to poor children. It would seem to be the best combination of idealism and technology, a pursuit of the greater good that also achieves the smaller good. It turns a necessary evil into unecessary benevolence.

Unless, of course, you're the baby getting the placebo.

If you're the baby getting the placebo, you are specifically and deliberately being denied a drug that could save your life. Scientists are watching you, hoping you will not do as well as your drugged hospital-mates. Indeed, your death would rather boost the statistics. Although there are drugs on the market right now, well past their testing phase, you will not have them. You will not have the experimental version. You will suffer even as people who could help you refuse to do so.

This, of course, has the people who make a business out of ethical concern concerned. The group Public Citizen has urged the Bush administration to put a stop to the planned testing, calling it "unethical and exploitive." One could hardly argue with that. And yet, what will the result of stopping the testing be? Instead of a small number of poor babies not getting the drug, a large number of poor babies will not get the drug. The placebo babies will be no worse off. But the babies who would have received the medication will be enormously so.

There is, apparently, a third option here. The drug could be tested solely against its competitors, skipping the placebo step altogether. The drug company argues that this would double the time the testing takes. Since it plans to sell the tested and approved drug in poor countries at a deep discount, this would prevent poor babies who aren't involved in the test from getting a chance to receive the drug. So again, the greater good. Those placebo babies will suffer not just for their fellow test participants, but for all the babies who would receive the drug in the extra year it would take to test without placebos.

And besides, are companies from richer nations obliged to give medication to poorer nations? Cannot a giver of gifts choose who receives them? If the testing is not actively harming the placebo babies, but merely keeping their care at exactly the level it would have been, why should any more be required? The babies that are helped are helped enormously; are the drug developers really obligated to do more?

As a citizen, as a Catholic who tries to hold a moral center in a world where morality becomes more and more of a liability, and as a person with a deep distrust of drug companies, my tendency would be to feel that yes, there must be a moral obligation in there somewhere. And yet -- as a parent, I can say unequivocally that I would jump at the chance to get my child a previously unattainable drug, even if there was a possibility that what he or she would get would be a worthless placebo. At worst, my child's care would be just the same as it would have been without the test; at best, it would be miraculously better. Those are odds I would take in a heartbeat, and I would be impatient with people who would argue about ethics if it slowed the onset of the testing for even a day.

As a parent, the choice seems clear. As a citizen of the world...not so much.

Which is why I'm glad I'm not the one who has to make the decisions.

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