Reporting on what seems to indicate a trend, The New York Times this week announced new federal recommendations that all newborns be screened. Proposed tests would expose at least twenty-nine rare medical conditions, from sickle-cell anemia to cystic fibrosis. Thankfully, the announcement is generating a fierce debate--and will hopefully put a stop to such foolishness.
Yes, foolishness. I am not a medical professional, but as a father of eight and a grandfather of thirty-six (with more on the way) I find the very idea of such testing abhorrent. For one thing, mandatory screening, like stem cell research, is yet another signpost on the slippery road that so often leads to abortion and euthanasia. For another, it may border on emotional abuse of the affected parents.
I know the strain that can result when screening is required. After one of our granddaughters was born with a clean bill of health, mandatory testing for cystic fibrosis showed her to be a carrier. Immediately, her parents found themselves on an emotional roller coaster. First they were told that everything was fine, and that they shouldn't worry. Then, at another doctor's office, they were advised that as parents, they had a duty to be tested, the implication being that they should not have any more children until they were "cleared."
For couples like this one, the choice they are placed before is an artificial, if not downright devilish, one: Wait until you're certain you can have a perfect baby, or don't have one. It's enough to make one nostalgic for the days when screening was not a possibility, and every child was welcomed as a gift from God, no matter his or her condition--and then entrusted to God with the prayer that His will be done.
Obviously, some babies who are screened will be found to have a serious disease. But even if diseases can be found, should looking for them be mandatory? Such tests are never infallible. Scientists, of all people, know how imperfect screening is: the rarer the disease, the higher the chance of a false positive, and thus the attendant financial and emotional costs. Further, mandatory screening violates a very basic premise in the medical field: that the disease in question be widespread. In truth, most of the ones currently under discussion are rare, and several cannot even be treated.
How can we allow millions of dollars to be spent on such a gamble in a time when so many families are enslaved by poverty--a poverty so grinding that basics like heating, healthcare, and nutritious foods are unaffordable luxuries?
Human life is a mystery, but at least one thing is clear: there is much more to it than a healthy body. And to those of us who claim to have faith, another thing ought to be clear too: that God is a part--the biggest part--of the mystery. Sadly, he is being left out of the equation more and more. Not that people don't talk about him, or invoke his blessing on everything they do. Washington, D.C., has never been so full of Christians. But where is the faith that gives us confidence to really rely on God?
To me, it is clear that every new life bears a message from another world; further, that God has a plan for each one, no matter how physically imperfect it seems; and finally, that God never makes a mistake.
I know how unpopular this last thought is in our culture. Prevailing attitudes in every arena, from medicine to education to popular entertainment, all point to an unspoken desire to eradicate human imperfection, and to create a master race, free from illness and ugliness and disability. But where will it all end? Have we so quickly forgotten the similar goals of the Third Reich, and the hells they led to?
No one would argue against good health as a worthy goal. But it has become more than that. It has become an obsession. We have become consumed with testing for cancer, testing for heart disease, testing for rare diseases which we might have, but probably don't. When a baby is born, our primary concern is not whether it has a loving home or an intact family, but whether or not it has a rare genetic condition. And this is fast becoming the way we treat everyone else, right down the line to old age. According to an acquaintance who works in healthcare, the main concern these days, when someone is dying, is not whether he is at peace with God, but whether his ventilator is at the right setting. Don't we have our priorities upside down?
I am not blind to the blessings of modern medicine. My sister is a doctor, my wife is a nurse, and I have nurses and physician's assistants among my children and children-in-law. There is always room for science and faith to complement each other, providing God is put first and medicine second. Yet our culture seems bent on reversing that order and placing reliance solely on medical knowledge and technology.
We are all losing because of this. No longer able to see human beings as souls made in the image of a Creator, we see machines. Afraid to face frustrations, uncertainties, and grief, we prefer to focus on physiological functions. We tend to reduce everything, from birth to death, to a matter of chemical and biological balances.
Part of the problem is our ability to be tested and treated for any condition we might think of. But even more, it is our inability to accept that pain and suffering are part of human life, and that each of us will die one day. If there is a national neurosis, perhaps this is it: our fear of illness, and of dying. Can this really be the will of God--the God described in the Gospels, who works in the weak and sick, and whose strength is revealed wherever human strength fails?
Pondering this question in light of the latest proposals for mandatory screening, another current story comes to mind: the situation of Pope John Paul II, and the world's ongoing concern for him. Here is a man who, despite advanced age and increasing infirmities, continues to inspire and guide and comfort millions.
As with a newborn, so with old age: wherever there is life, there is God. So let us embrace and accept life, as God grants it to us, and trust that he will always overcome the powers of death, even if in his own way and time.
In the meantime, let us not shy from the suffering caused by disability and disease, but--as Jesus taught us--show compassion to everyone weighed down by their often overwhelming burdens. Such compassion can be life itself to those who receive it.
by Johann Christoph Arnold
[Johann Christoph Arnold is an author and pastor with the Bruderhof Communities.]