A Bioethicist’s Perspective: Why consent for newborn screening matters
Imagine you are leaving your local hospital or clinic, having just completed a routine visit for a nonserious problem. As you approach the main exit you are tackled and held down by 4 strong men in white coats. One of them grabs your arm, and another sticks your finger with a lancet and guides a few drops onto a small paper card. He applies a small Band-Aid and then they let you go.
“What the hell was that all about!?” you sputter.
“Well,” says the apparent leader, “We think there’s a 1:10,000 chance you have a really bad disease that could cause your brain to rot, and if you do have it, and if you go on this pretty unpleasant diet for the next 5 years, you will probably be OK.”
What’s wrong with this picture? Let me count the ways. First, it seems to be a simple case of battery, with witnesses, and you should be able to get a substantial settlement from the hospital that employs these guys, assuming they have enough sense not to go to trial.
Second, there are laws in every state that generally require healthcare providers to ask you if you would be interested in getting medical care. There are exceptions, but not for situations like this. The laws are based, among other things, on the foundational ethical principle of liberty: the notion that a competent adult should be free to live his or her life the way he wants, unless he or she is causing harm to someone else.1 Because you’ve never heard of the disease they’re talking about, you might have a lot of questions. That is, before deciding whether you wanted to have this test and before consenting to have the test, you would need to be informed of some basic facts.
You might want to know, for example, whether or not this test is accurate, particularly whether there are false positives that could the scare the bejeezus out of you and lead you to start on this nasty diet for no good reason. Also, you might want to know what the evidence is that the diet really worked, or worse, whether it might be harmful.
“Time out!” you might say at this point. Why is the absurd story appearing in a respected medical publication? Everyone knows these principles. Adults don’t get assaulted like this in trusted healthcare facilities.
Precisely, but children do—the persons least able to defend themselves, run away, or hire lawyers. Not big children so much, but the smallest most vulnerable ones—newborn infants.
Treat or die?
Theoretically, the same rules are supposed to apply. Children are not supposed to be attacked like this without consent, and because they are incapable of providing meaningful consent (although they are pretty good at expressing their dissent!) someone has to do it for them, presumably their parents. That’s what the laws and innumerable professional guidelines say.2,3
However, since the early 1960s, virtually all children have been restrained, stuck, tested, and referred for treatment with very little involvement by their parents until after a test result comes back positive, when the parent is presented with a Hobson-like choice: "Treat or die!” or suffer profound brain damage or some other serious disability.
The usual rationale for this is that some rare but horrible preventable disease will befall the child; parents and doctors can’t be trusted to test for or treat these diseases; hence, the usual requirements for consent need to be suspended to protect children from harm.
Of course, the same argument could be made about adults—that they, and their doctors, commonly fail to get needed tests or treatments and suffer great harm as a result—but no one has suggested that assaulting them, without their consent, is justified to protect them from harm. Let’s skip that pesky inconsistency and get back to the infants.
The claim that it’s OK to invade a child’s body, without the parent’s consent, falls apart if the invasion involves a test of uncertain or unknown validity, and treatment of uncertain benefit and risks. Suspending the basic principle of consent, one would think, is a really big deal, and the invader should be really sure that the alleged harms and benefits are based on good science, not just a hunch that the test and treatment plan are good ideas. In fact, there is a federal law that prohibits newborn screening for research purposes without explicit consent.4