Children of the State

September 16th, 2010 - by Quincy

A short time ago, my wife and I were blessed with the birth of our third child. Those who have had children recently may remember the extensive battery of medical tests that a hospital-born baby suffers through during the first days of life. Since my wife and I are not medical experts, we usually trust the attending doctors’ and nurses’ assurances that these tests are effective and helpful and that the benefits outweigh the risks. But after a conversation with one nurse, we had some concerns about the PKU test. The nurse advised us that the PKU test often had to be needlessly repeated because the maternity ward staff regularly performed the test too soon after birth—precluding reliable results. The PKU test, also called newborn screening, is unpleasant: a nurse cuts the baby’s heel with a razor blade and dabs blood on a card. So we thought it would be good to wait and have the test done only once.

Shortly before being discharged from the hospital, the test was done, and we thought that would be the end of it. But due to some mix up, the hospital told our pediatrician that the test had not been done. It was during the ensuing efforts to clear up the confusion and transfer the necessary paperwork that we learned that the PKU test is more than just another precautionary medical test; it is mandated by state law. In fact every state in the union forces parents to subject their kids to a local variety of the newborn screening test.

Now, let me be clear that I don’t oppose PKU testing. Left perfectly free, I would probably still choose to have my children tested. From my layperson’s perspective, it seems to make sense: for the cost of a small cut and a couple of hundred dollars, the test can identify several devastating potential medical problems, some of which can be successfully treated. But some people, including some doctors, disagree. There is ongoing debate about what disorders the newborn screening should test for, and there is also disagreement about whether the disorders identified by the current tests are even treatable.

One critic, Norman Fost, professor of paediatrics and bioethics at the University of Wisconsin in Madison notes that when PKU screening was put into place more than 40 years ago it was assumed that if a child had high blood phenylalanine they had PKU and should be fed a strict diet. But there were few data to support that assumption, says Fost. “It turned out that 95% of people with an abnormal screening test had no disease, and it turned out the diet was lethal. It caused brain damage in we don’t know how many kids, and killed we don’t know how many kids.”

Harvey Black, “Newborn Screening Report Sparks Debate in USA,” The Lancet, Volume 365, Issue 9469 (2005). The currently recommended newborn screening procedures are controversial as well:

“They did not develop their arguments based on a careful analysis of the literature. The methodology is not strong” says Jeffrey Botkin, professor of paediatrics and medical ethics at the University of Utah in Salt Lake City, Utah. … The ACMG working group, he argues, did not provide data to show that kids will do better as a result of early intervention based on newborn screening.

Id. Aside from concerns about the tests’ effectiveness, some are concerned about privacy violations inherent in corporate and government collection of DNA. See here (lawsuit over Texas’ program), and here (statement by Ron Paul about the risks of a proposed national program). From my perspective, however, the more serious problem is that parents are not free to decide whether to have their children tested. This is an unjustified invasion of parental rights. Take a look at Utah’s laws as a run-of-the-mill example.

The rules governing newborn screening provide, “Each newborn in the state of Utah shall submit to the Newborn Screening testing, except as provided in Section R398-1-11 [exception for religious objectors].” R398-1-3. To ensure compliance, medical providers are required to report parents who refuse the test. “If the medical home/practitioner or institution has information that leads it to believe that the parent or legal guardian is not complying with this rule, the medical home/practitioner or institution shall report such noncompliance as medical neglect to the Department.” R398-1-13 (emphasis added).  If a medical provider fails to snitch on reluctant parents, she will be fined: “Any medical home/practitioner or facility responsible for submission of a newborn screen that violates any provision of this rule may be assessed a civil money penalty.” R398-1-18.

A report of medical neglect is no small matter. It falls under the general definition of “neglect” found in the Utah Code. “‘Neglect’ means: … (iii) failure or refusal of a parent, guardian, or custodian to provide proper or necessary subsistence, education, or medical care, or any other care necessary for the child’s health, safety, morals, or well-being.” 78A-6-105(25)(a) (emphasis added). A finding of medical neglect gives the state the power to take your kids away. “The court may terminate all parental rights with respect to a parent if the court finds … that the parent has neglected or abused the child.” 78A-6-507(1) (emphasis added). In my opinion, these laws are unjust. Laws which give government the power to take away a couple’s  parental rights because they didn’t have their child tested for rare genetic diseases turn the proper relationship between citizen and government on its head.

Advocates of newborn screening trot out the usual wild rhetoric to justify this government-forced medical testing:

These are our children: the single greatest treasure we have as a nation and as a people. … Given the statistical prevalence of treatable metabolic disorders, not using MS/MS [an advanced newborn screening procedure] today to screen babies comprehensively is no different from shooting a gun into a crowded stadium. You cannot know whom you will injure, but it is a safe bet that you will injure someone.

Charles P. Hehmeyer, “The Case for Universal Newborn Screening,” Exceptional Parent Magazine, 88 (August 2001). The analogy to a gunman in a stadium is blatantly false. Someone who shoots at a group of people creates the risk of harm, but a person who declines a medical test simply fails to mitigate a pre-existing risk of harm. These acts are very different morally as well as legally. But even setting aside the blatantly false analogy, the argument fails. It rests on a false assumption. It assumes that children are a national resource to be guarded, guided, and regulated as the majority dictates. In fact, if children can be said to belong to anyone, they belong to their parents and themselves. Neighbors, friends, and community do-gooders have no rightful claim at all. (For a more detailed argument about this point, see my previous post: Whose Kids are They?)

Usually, a medical provider must obtain informed consent to perform any medical test or procedure. Usually, parents are the legal representatives of their children, and have the sole authority to consent or refuse. Newborn screening is a deviation from this usual practice. Consequently, some medical ethicists criticize mandatory newborn screening as unethical:

Does newborn screening policy take appropriate account of fundamental and widely respected American values concerning confidentiality, privacy, and informed consent? The mandatory nature of newborn screening seems inconsistent with these values. The standard rationale for mandating public health measures such as mandated immunization or treatment of infectious disease is that the measure will avert serious, imminent harm to others, but this rationale does not apply to newborn screening. Instead, the justification for requiring screening without parental informed consent has been that the risk is minimal and the child will lose a vital benefit if screening is not done immediately. Even under these circumstances, not all ethicists think that omitting informed consent is acceptable. Broadening the rationale makes the omission even more questionable. If the rationale is a family benefit, such as information that can inform reproductive decisions or help avoid diagnostic odysseys, or a societal benefit, such as identifying potential research subjects for the study of currently untreatable disorders, then the ethical requirement is clear: parents should be informed and allowed to make their own decisions.

Mary Ann Baily & Thomas H. Murray, “Ethics, Evidence, and Cost in Newborn Screening,” Hastings Center Report 38, no. 3 (2008): 23-31.

Lately, political machinations at the national level have excited many people to become involved in protests and movements. This is good. But the reality is that the average citizen has far more control over state policy than over national policy. A little effort to move state policies in the direction of freedom can make a big difference. Mandatory newborn screening is a state program, so this is something we can fix. Regardless of whether you believe newborn screening is good for your own children, it should be clear that forcing others to adopt the same opinion violates individual rights and human equality.

When my wife and I decided to have a third child, we didn’t do so to provide another subject for the state or another unit in a managed population. We want our children to be free individuals, not children of the state.

5 Responses to “Children of the State”

  1. Dave says:

    It’s a good post, but I think it’s a minor issue compared to the The Infant Vaccination Controversy. And the debate of that issue may not necessarily focus on the conspiracies to use government vaccines for vague nefarious economical purposes, but instead to point out that it’s not the government’s job to make that decision in the first place. Another point is the consequence of making the citizens reliant on the government; or making the government liable for any consequences.

  2. Sean says:

    Very good post, apart from the last paragraph, which I find a bit melodramatic – characterizing a required medical test as providing another subject “for the state” or as a “unit” – seems a little over-the-top. Though it is certainly not as silly as the absurd “firing a gun into a crowded stadium” metaphor, which I’ve encountered several times in my “products liability” course. I think we’ve ended up with a lot of bad policy from the “won’t somebody please think of the children!” rationale. Personally, I don’t remember them doing the PKU screen on Adam, Lauren thinks they did it with blood they’d drawn for other reasons.

    The tests certainly don’t have the same public health externalities that vaccines do, so you can’t support these tests with market failure reasoning. Obviously infants should be vaccinated, where vaccines are safe and effective, if not for the infant’s sake, then for the benefit of all other individuals in society.

    I’m certainly not qualified to discuss ethics with you, but even without the externality argument, I’m still not sure this decision is something to get worked up about. If you weigh the potential damage from requiring the test – mental distress to parents from not letting them choose which important medical tests to administer – against the potential problems with the child’s brain development, I’m not sure how the result comes out. Certainly phenylketonuria is uncommon enough it isn’t a slam dunk for either group. I know you won’t like the balancing idea, but I don’t know how else to reconcile important, but potentially conflicting, rights of parents and infants.

    Either way, I’d oppose the hospital keeping the blood sample for other purposes, and I’d insist the hospital provide information about the test to parents beforehand. If I was the policy maker given this choice, I’d need some statistics before I could be confident siding with either group – making the test required or optional. Characterizing avoidance as “neglect” which permits the state to seize children (though I doubt seizure on these grounds is common or incontestable) also seems unduly harsh, perhaps a fine slightly in excess of the cost of the test would be more appropriate.

    As a side note, I’m not sure characterizing the effectiveness of medical tests is an issue of “opinion.” If the test is effective and safe, the harms are clear and significant, and the treatment is effective and basically side-effect free, I don’t know if there is much room for opinion. For example, antivaxxers aren’t expressing an opinion any more than the flat earth society. If the science is clear, which it may or may not be here, I don’t think you can shield bad information and illogical beliefs under the label of an “opinion.”

    Thanks for the post!

  3. Quincy says:

    The point of my argument is not that the PKU test/newborn screening is ineffective or harmful. I included some viewpoints to that effect only to show that the question is still unresolved. The point of my post was to condemn coerced medical testing.

    Preserving the appropriate relationship between the state and children is hard. No one likes to see parents make foolish decisions which threaten or harm their children. But that doesn’t justify granting the state the authority to mandate medical treatment/testing or allow it to usurp parental rights. Foolishness or ignorance does not justify state intervention. State intervention is only justified if parents act with intent to harm their children.

    Regarding opponents of infant vaccines, or the antivaxxers as Sean called them, I don’t know enough to argue the science. Anecdotally, one of my close relatives suffered such a severe reaction to a vaccine that she was hospitalized for a time. She manifested the symptoms of a severe case of the disease for which she was vaccinated. So I know that vaccines aren’t all safe, but that isn’t enough to complete the risk analysis.

    But so far as I know, parents are free to decline vaccines on behalf of their children. Parents are not free to decline the PKU test/newborn screening. That is the more serious problem, and that is the reason for the rhetoric. When the state forces parents to subject their children to testing or treatment, the relationship between the individual and the state is corrupted, and individual autonomy is violated in favor of the majority’s will.

  4. [...] infoRipple « Children of the State [...]

  5. Quincy says:

    An update on the PKU testing … we are still getting calls from bureaucrats insisting that we have the test redone.

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