The public health goal of achieving herd immunity through massive vaccination against the coronavirus is a worthy goal. But, it also demonstrates the normative effect of prenatal testing leading to fewer babies being born with Down syndrome.
First off, I get that I am seemingly viewing everything through the lens of “see how everything can be processed through my critique of how prenatal genetic testing is administered?” You ask a surgeon how to fix a problem and the answer is to cut; ask a lawyer, sue; if you’re a hammer, the world is a nail. But, hear me out and then let me know if my concerns are baseless.
The desired normative goal of COVID-19 vaccinations
So many people have received a version of the COVID-19 vaccine, myself included, that it’s already produced a variant on an old joke: “How can you tell a person is a vegetarian? Just wait, they’ll tell you.” Same goes for “How can you tell if a person got the coronavirus vaccine? They’ll tell you.”
If you have an account on any social media app, you no doubt have seen with increasing regularity vaccine selfies. Indeed, many vaccination sites have “selfie-stations” encouraging those who got “jabbed” to snap and post on Facebook, Instagram, Twitter, etc., etc.
Vaccine selfies have become so pervasive that respected news outlets are devoting columns about whether the selfies are a form of on-line shaming to those who are vaccine hesitant and re-emphasize the inequity in healthcare access.
To counter these efforts to discourage public sharing of getting the vaccine, members of the public health community are encouraging these vaccine selfies. As succinctly put by Dr. Richard Baron, the president and chief executive of the American Board of Internal Medicine, as quoted in a Washington Post article:
“It makes it normative,” Baron said. “It makes it the thing to do.”
(emphasis mine).
For Dr. Baron, and most health professionals, this normative effect is desired. The quicker society can develop herd immunity either through infection or–the better option–vaccination, the quicker the coronavirus develops into just a really bad flu and not a deadly pandemic claiming millions of lives worldwide.
As much as I share the desire to get back to a pre-COVID-19 life through being vaccinated and society becoming resistant to the virus, this normative effect will not be contained within just medical decisions about coronavirus.
The crass, money-driven desire for prenatal genetic testing to be “the thing to do.”
Unlike the COVID-19 vaccines, which actually lessen the likelihood of the patient who received the vaccine from both becoming infected with the virus and greatly minimizing the worst effects should they become infected, that is not how prenatal genetic testing works.
Instead, a patient who receives prenatal genetic testing is already pregnant. The testing does not prevent the expected mom from being pregnant or even prevent her pregnancy from having Down syndrome or another genetic condition. All it does is detect whether her pregnancy is positive for Down syndrome or not. In this way, prenatal genetic testing is more analogous to coronavirus screening testing to see if the individual is has COVID-19. But, in this, there is another distinction.
Unlike with COVID-19 screening, where, if positive, the patient has a precise plan advised by her physician and employer of self-quarantining for a period of days and then what to do if symptoms worsen–all of which is to improve the patient’s health and those she otherwise would come in contact with–that’s not how it works with a Down syndrome prenatal result.
Instead, studies have found the delivery of a prenatal test result for Down syndrome is overwhelmingly a negative experience due to inaccurate or no accompanying information about the condition, an emphasis on the negatives about the conditions, and a guaranteed discussion about termination, but not about other options, especially adoption.
Yet, in Western European countries and other countries with public health systems, the normative effect of having prenatal genetic testing and then terminating if the test is positive for Down syndrome has taken hold of the public. It is “the thing to do.” Just a review of the numbers show the eradication of future generations of children with Down syndrome in France, Switzerland, provinces of Australia, Iceland, Taiwan, and Denmark.
In a certain way, as well, the normative effect of prenatal genetic testing comes from a common motivation for the normative effect of coronavirus vaccination.
The coronavirus vaccination normative effect is desired because as more people become vaccinated, the safer everyone becomes. Similarly, the more people have prenatal genetic testing, the greater overall health for the public health system.
Or, at least, that is how CEOs of testing laboratories, members of large health care systems, bioethicists, and public health officials charged with administering public prenatal genetic testing programs describe it.
Except, whereas with COVID-19 vaccines there truly is an improvement in both the health of the person and the health of society, with prenatal testing for Down syndrome, the improved “health” really means “more money saved in the public health system.”
This is because public health systems and testing laboratories justify the up-front costs invested in offering prenatal genetic testing to all pregnant women for a condition that will manifest in less than 0.2% of the pregnancies because they argue, through terminating affected fetuses, the overall system is “saved” the additional costs that life would have put on the system.
The spillover effect of normalizing what should be individual choices
Throughout the pandemic, there are accounts of shaming: mask shaming of those who refuse to wear masks, crowd shaming of those gathering in crowds. And, as someone who has written of the dramatically higher risk my daughter and others like her with Down syndrome have should they contract the virus, that public shaming has some justification in trying to keep everyone safer.
But, I can’t help but expect there will be a spillover effect of the younger generations growing up and shaping their decision-making and values during this pandemic. Being told that getting tested and taking a medical intervention is “the thing to do” both for your health and everyone else’s is how the United States could join the path of other countries in eradicating future lives with Down syndrome.
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