Serving the Imperfect

The Stark Choice Between Compassion & Fear-Fueled Modern Eugenics

The use of non-invasive pre-natal testing (NIPT) to diagnose genetic disorders in unborn babies has been making inroads in obstetric medicine for most of a decade now. As acceptance of the technology has grown, public debates over the costs of such tests have erupted in Europe and North America, with many people arguing that they should be covered by government-subsidized healthcare systems.

In Canada, Germany, France, and the UK, the subject has also fueled debates about the ethics and fairness of performing such tests for the purpose of weeding out persons with genetic disorders, such as Down syndrome or Turner syndrome. The Canadian magazine Public Policy Options noted that, "as the use of NIPT increases, concern grows that it could well enable discrimination toward people with Down syndrome." The pro-life group Live Action reported that such discrimination was being encouraged in Wales through the routine distribution to women receiving NIPT of a pamphlet that was "overly focused on the medical problems associated with the screened-for conditions." The pamphlet was later withdrawn when Down syndrome advocacy groups protested.

In early 2019, the BBC news reported on a case in which a woman received a false diagnosis of Turner syndrome from an NIPT test. Fortunately, the woman was aware of how inaccurate the tests could be and decided to continue the pregnancy anyway. The baby she then gave birth to did not suffer from Turner.

A good outcome like this, however, is relatively rare. What is likely to become more common is the sort of outcome an Irish couple experienced last summer. These parents suffered the horror of learning that the NIPT diagnosis of the child they had just allowed a doctor to abort had been wrong. The test indicated that their child had Edwards syndrome, or Trisomy 18, and doctors told them that there was no hope for treatment or for their child to have much of a life at all.

It was later discovered, however, that there had been nothing wrong with the child—no genetic abnormalities, no physical defects. The diagnosis had been based on the results of a procedure called chorionic villus sampling (CVS), in which cells taken from the placenta are checked for chromosomal abnormalities, but in this case the test results were wrong. Yet the child was still killed, culled like a sickly calf or runt piglet, and if the defect had been present, those doing the culling would likely have felt as little remorse or regret as any hard-bitten, financially strapped farmer.

A Merciless Ethic

But the Irish couple's doctors were neither hard-bitten nor financially strapped. They were well-educated, well-heeled members of the medical profession, whose very foundation is supposed to be an ethic of compassion toward the weak and suffering. But in many places in the West, this ethic has largely been replaced with an ethic of utilitarianism, which justifies hunting down and killing those who suffer. The driving idea behind recent public policy developments in both Europe and the United States seems to be that the earlier a sufferer can be found and eliminated the better. Hence the push to identify and kill persons with genetic defects while still in the womb.

This excerpt from a blog posted in 2015 on the Brown University website puts the matter bluntly:

[T]he only way to prevent genetic disorder is to prevent the birth of an individual at risk; therefore, when a woman feels that she is absolutely unable to care for a child with a chromosomal abnormality she will abort. This can happen even if a woman is aware of the high risk of the positive result being incorrect because any risk is too much risk.1 (emphasis mine)

The implication is that deciding to burn, poison, or dismember to death an inarguably defenseless and innocent person because that person is afflicted with a genetic disorder can be morally justified on the basis of risk; i.e., it is assumed that avoiding the "risk" of feeling overwhelmed by the care requirements of a disabled child is a legitimate justification for murder. Note how the excerpt ends: for people who hold this mindset, any risk is too much. It is unfortunate that NIPT might lead to the killing of a normal, healthy child, but that risk is worth taking because avoiding the risk of having to extend compassion to a disabled child is paramount.

And in fact, prenatal screening for Down syndrome has already led to an increase in abortion in the UK and elsewhere. Though there will be false positives and false negatives wherever NIPT is used, the default justification for performing the tests in the first place is to allow parents to make "an informed decision" on whether or not to have their son or daughter killed should the child appear to be handicapped.

And there is little question now of what healthcare officials in, say, Ireland, England, or the EU consider "an informed decision": when a test result is positive (even though it may later prove to be false), they will advocate for termination. In fact, given that public support for NIPT has been increasing, the question now being argued over is whether or not such testing should become standard procedure in prenatal healthcare.

A Tool for Targeting Disabled Children

"Reproductive rights" activists are, of course, pushing for this. But they will first have to sell people on the reliability of the tests, and they are not above fudging the statistics to be able to claim that false positives are almost unheard of. One blogger on The Pregnancy Lab website noted that some studies claim a 99 percent accuracy rate for NIPT tests even though the positive predictive value (PPV) of a test, i.e., its ability to accurately detect a genetic anomaly, varies depending on the disorder being looked for. The blogger cited the disparate PPVs emerging from tests for Trisomy 21, 18, and 13 that had been reported on in the journal Nature:

The PPV for T21 was highest at 93% followed by a 64% PPV for T18. The PPV for T13 was only 44%. Given the prevalence of each of these conditions, these data aren't all that surprising but they are still rather alarming. Why? Because several studies have claimed NIPT tests are >99% specific (e.g. ~1% false-positive rate). As the authors of the study described here state: "To an average clinician, the claim that a test is >99% specific leads him or her to expect that the false-positive rate will be <1%."2

While it is laudable to alert people to the fact that NIPT tests aren't as conclusive as they may be touted to be, this kind of reporting is still disturbing because it treats the incidence of a false positive, which will almost certainly lead to an abortion, as less of a tragedy than a false negative, which will likely lead to the birth of a handicapped child.

Hence, medical researchers are focused on optimizing the PPV of NIPT because, once it becomes high enough, it can be used with confidence to detect "defective" children and target them for abortion. NIPT will thus become the perfect tool for a genocidal philosophy aimed at exterminating certain sub-sets of humanity. The high PPV, the test's accuracy in detecting lebensunwertes Leben ("life unworthy of life"), is the selling point—today, in the industrialized and technologically advanced countries of the world; tomorrow, in every place to which the procedure can be exported.

Fears & Fear-Mongering

In Germany, where I live, a public-health policy fight has been roiling for the last decade or so over the question of whether to allow pre-natal testing of any kind and, if so, what tests should be allowed, who should pay for them, and how and to what degree should they be allowed to guide medical decision-making. This debate has been circumscribed by the fear of a return of Eugenik vom Unten, literally, "eugenics from below," the Nazi-era practice of eugenic selection to control who breeds and who doesn't. That fear has placed a significant restraint on Germans' acceptance of this newest perversion of medical ethics.

In France, however, that fear is not felt as much, while another fear is being exploited. French officials use a marketing strategy whose aim is two-fold: on the one hand, to gin up the fear of having a disabled child, and on the other, to deceive parents into thinking that killing their disabled child is the most moral act they can perform. These "defective" children, as identified by NIPT, would only suffer if allowed to live, and suffering must be eliminated—by eliminating the sufferers. Fear of suffering is a powerful force that those selling a "solution" to must keep at a high pitch; hence, ads simply suggesting that children with Down syndrome can lead happy lives have been banned in France.

One can see this fear-mongering at work in the rhetoric used by a group of women in Denmark who received false negatives from NIPT and are now burdened with the care of a child with Down syndrome. Here is how one member of this group framed the "problem":

We are convinced that all parents like us hope, above all else, to give birth to healthy children. We have been ready to undertake all the best possible and recommended procedures to guarantee this. We have put our trust in the assurances of the NIPT test manufacturers as well as our doctors, often pulling out of invasive tests in favour of NIPT believing that we will receive equally reliable results. However, that has not been the case and the number of people in our group clearly demonstrates that the risk of not detecting Trisomy 21 via the NIPT test is far greater than attested by some manufacturers. A false negative NIPT has deprived us of the possibility of taking an informed decision as to our future motherhood and the need to prepare ourselves for bringing a child into this world burdened with Trisomy. Our hopes for a healthy child, hopes and plans for our life and ambitions for the future have been destroyed. Our lives now revolve solely around having to bring up a child with Down syndrome and feeling deprived of all hope and being left without any help and care by the manufacturers of NIPT. We are too scared even to think what is going to be when we will no longer be here to support our children.3 (emphasis added)

Notice whose "hopes and plans" are not mentioned here as being worthy of consideration: the babies who were born because an inaccurate test result deprived their mothers of the opportunity to kill them for being defective. These tiny persons would not have received even the most basic form of compassion, being allowed to live, if their mothers had known of their condition before giving birth.

In the eyes of NIPT advocates, and their disappointed customers, the very existence of a life with suffering—even a brief life with suffering—is too much an affront to their personal comfort to be allowed. A child who suffers from Trisomy 18 or 21 must not be allowed to make moral demands of them, to ask them to extend themselves in mercy and compassion. Rather, to this mindset, if a child's suffering cannot be eliminated through treatment of its physical causes, then it must be eliminated by forcing the child to suffer to the ultimate extreme, the suffering of death.

The healthy and the strong must not be asked to embrace the sickly and the weak in their struggles and pain, but must forever be released from such intrusion into their otherwise comfortable lives. And parents must be made to feel good about their decision to terminate their defective child before his suffering becomes noticeable to them.

Another False Solution

What's being sold in all these examples is really the desire for a family life unburdened by the demands of compassion. Advocates of NIPT, of course, don't want to think of themselves as selling fear and self-serving justifications for hard-heartedness, but that is what lurks behind all the language of "choice": the promise of a life free from the valid demands for mercy and compassion made by one's own offspring, should those offspring suffer from a detectable defect. NIPT is consequently just the latest, well-marketed product promoting a philosophy that sees itself as leading the way to the perfection of man and his world. And like every other "solution" to the problem of human imperfection apart from Christ, this one ends with the shedding of innocent blood. 

Notes
1. Alexandra Chretien (Feb. 21, 2015): https://blogs.brown.edu/anth-1242-s01/2015/02/21/a-false-sense-of-security-false-positives-from-prenatal-testing-lead-to-abortions-of-healthy-babies.
2. The Pregnancy Lab (Dec. 8, 2014): https://pregnancylab.net/2014/12/the-ugly-stepsister-false-positive-nipt-test-results.html.
3. https://niptfalsenegative.com.

is a professional translator, missionary, and writer living in Germany, where he works with several different ministries, and lives in a Christian intentional community. He has written academic articles on medieval literature and culture and has published essays in Salvo, First Things, and Boundless. He is a native of Indiana.

This article originally appeared in Salvo, Issue #53, Summer 2020 Copyright © 2020 Salvo | www.salvomag.com https://salvomag.com/article/salvo53/serving-the-imperfect

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