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This week, the parents of Charlie Gard received some of the most hopeful news they’d heard in months: Doctors at Great Ormond Street Hospital (GOSH) have applied to the British High Court for a fresh hearing in the case of 11-month-old Charlie, who suffers from a rare mitochondrial disease. Up until Friday, the infant’s doctors had deemed his condition incurable and were prepared to let Charlie “die with dignity” by taking him off life support against his parents’ wishes.
But thanks to “new evidence relating to potential treatment for his condition,” which a team of medical professionals presented to GOSH this week via a letter, Charlie’s doctors are willing to do what the child’s parents have been pleading with them to do for months: give Charlie a chance.
Friday’s news was rightly met with international celebration among those who have been pulling for the Gard family in their battle against the courts. But even the latest “victory” leaves Charlie’s parents at the mercy of another court that may or may not uphold their parental rights.
Which brings me to this point: Medical experts have been given a terrifying amount of leverage in the Charlie Gard case. Not once have the courts seriously entertained the idea that the boy’s parents might actually be the most qualified in determining what’s best for their own child, or that moral arguments might be just as valuable as medical opinion in this case.
While it is always wise to consult knowledgeable individuals and groups when making an important decision, the Gard case is reflective of a certain bias that has spelled disaster for humans in the past. I’m talking about society’s selective reliance on so-called “scientific experts.” Technocrats who employ the scientific method are A-OK, while theologians, philosophers, and ethicists are deemed too irrelevant to merit a seat at the table.
Many have highlighted the problem of medical experts’ power over Charlie’s own parents, as reflected in every damning court decision that favored GOSH over Gard and Yates. Few, however, have called attention to the fact that there is far from a universal consensus regarding Charlie’s health, and that even still, these doctors are willing to let an innocent baby boy die.
In his 2010 work, “MODERN AND AMERICAN DIGNITY: Who We Are as Persons, and What That Means for Our Future,” the late political philosophy professor and author Peter Augustine Lawler writes extensively about how the cult of science has shaped modern American culture. While serving on the Council of Bioethics under President George W. Bush, Lawler observed the various problems that can emerge when scientific evidence is so highly prized that it replaces faith, morality, legal precedence, and reason itself.
Lawler notes that the real trouble arises when we no longer allow science to serve us, but instead serve science. The following paragraph may as well be describing the many medical “experts” who have shaped every court decision in Charlie’s case:
Scientists — be they neuroscientists or neo-Darwinians — characteristically find no scientific evidence for the reality of dignified personal significance, even if some of them regard it as a most useful fiction. They have declared themselves incapable of defending the indispensable truth about who we are. They can offer a variety of hypotheses about why each of us demands personal significance, but they do not really think there is any evolutionary or neuroscientific support for the dignified ‘I’ each of us claims to be.
When human dignity is deemed irrelevant in making important decisions regarding human life, injustice reigns.
Charlie’s case is not the first time so-called “experts” have been given power over life and death. During the early twentieth century, American social scientists and medical professionals advocated for the mass sterilization and institutionalization of individuals based on perceived racial and intellectual “unfitness.” Sadly, this dark era known as the eugenics movement is rarely taught in American history classes today.
Britain has its own history of eugenics. In fact, the term “eugenics” was coined by British social scientist Francis Galton, a cousin of Charles Darwin.
Proponents of eugenics drew from the Christian “ideal of human perfectibility” and saw science as the way to achieve biological “redemption” for mankind. In pre-World War II America, “eugenics” became a blanket term that covered a wide range of reforms, including health, sex, hygiene, marriage, and morals.
The leading eugenicists of the early twentieth century were the technocrats of their time. Today, however, we call them what they actually were: evil.
“The progress of medical science in alleviating suffering and extending human life does serve the cause of human dignity, but not at the expense of destroying lives or compromising our principled devotion to the significance of every person,” Lawler writes.
If Charlie’s doctors decide to pull the plug, the 11-month-old will be a victim of our own hubris. His blood will be on the hands of conceited “experts” who didn’t care to hear any alternative information or arguments other than their own. Their negligence will be remembered as one of the great moral crimes of modern history.
Charlie’s case will be reviewed once more by the British High Court on Monday, July 10, at 2 p.m. local time.