Few, I suspect, who appreciate Martha Beck's Expecting Adam will find it possible to contemplate these pronouncements about genetic engineering by leading intellectuals without yielding to disgust or fury.
That, of course, is not a particularly healthy response, and it may be part of what Beck had in mind when she said she was "very much afraid of being caught in the firestorms of controversy over abortion, genetic engineering, and medical ethics." But I'm sure she would grant that her experience as a parent of a Down syndrome child is indeed relevant to much of this controversy. Personally, I would say that her experience is what is most crucially missing from a great deal of it.
Here, then are a few brief observations of my own about those quotations.
The first thing that strikes me is how easy it is for intellectuals to toss off grandiose statements-in-the-abstract, and how gut-wrenchingly hard it is for a Martha Beck or any of us to compose our lives into worthy statements that are true, beautiful, and good. When the former statements are not the distilled wisdom of the latter, something has gone badly wrong. Technologies give us the means to talk in a hollow way about all kinds of sweeping change, but the change that really matters is always and only the change we produce out of an inner, transformative work. The pursuit of any other change as if it could substitute for this work leads us along the broad and easy path to trouble.
The genetic engineers and cheerleaders quoted above seem remarkably confident that they have mastered what the rest of us have not: namely, what it means to be human. This is odd considering that most or all of them would profess discomfort with the language of meaning as opposed to the instrumental language of science. Without hesitation they talk about making human beings better, as if this gave us an obvious roadmap for the re-engineering task. Rarely do they make their own roadmaps explicit, but you can be sure that, on their maps, their own lives count as better and more meaningful than Adam Beck's.
When the Becks first faced the remote possibility that their child would have Down syndrome, John took it for granted that Martha would abort the fetus. "It's like shooting a horse that's broken its leg," he explained.
"A lame horse dies slowly, you know?" said John. "It dies in terrible pain. And it can't run anymore, so it can't enjoy life even if it doesn't die. Horses live to run; that's what they do. If a baby is born not being able to do what other people do, I think it's better not to prolong its suffering."
A highly distraught Martha responded, "And what is it that people do? What do we live to do, the way a horse lives to run?"
At this point John had nothing further to say. At an impasse, they wisely let the conversation die. John could only embrace Martha, who felt his heart beating beneath his coat.
For a moment, I let the anxiety in my chest relax, let myself forget everything I had to do that day, let myself feel utterly safe. And then I understood that John was answering my question, even though he didn't know he was. This is it, I thought. This is the part of us that makes our brief, improbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.
On his part, Adam was capable of extracting endless joy from life much more, perhaps, than most of us.
The immediacy and joy with which he lives his life make rapacious achievement, Harvard-style, look a lot like quiet desperation. [Despite requiring less attention than other children] Adam has slowed me down to the point where I notice what is in front of me, its mystery and beauty, instead of thrashing my way through a maze of difficult requirements toward labels and achievements that contain no joy in themselves. Adam takes his joy straight up, in purer form than most of us can handle.
Who is so all-knowing as to tell us that the satisfaction and achievements of Harvard professors are more valuable for the race, more worthy of being granted existence, than those of Adam?
As to the sufferings of Down syndrome children, aren't most of these inflicted by the rest of us that is, by our inability or unwillingness to overcome our own insecurities and discomfort in the presence of people who seem deformed? This does not put us in a great position to talk magnanimously about putting them out of their pain. Maybe we should just stop inflicting the pain.
To say that there is inevitable pain in great limitation may be a half-truth. But this is to ignore the age-old wisdom that overcoming our limitations comes close to being the essence of human life. Certainly it is the source of many of our deepest satisfactions. Probably the most truly handicapped people on earth are those who imagine themselves most free of limitation mentors for a new race of supermen. Lacking acknowledged limitations, they have ceased even the common struggles that might have made them into men.
Read those quotations about genetic engineering a few more times, and pay attention to the inner gesture that seems to animate the words. I suspect you will notice a certain brittleness and superficiality, a play of logic without any profound wrestling with the meaning of the terms employed. And along with this goes the arrogance that always seems to follow when the force of logic is mistaken for depth of understanding. It is texts like these that convince me most fearfully of the possibilities for reducing ourselves to computational machines.
So it is that James Watson can sneer at those who believe the human genome has "some sanctity in it" apparently without recognizing his implicit claim that his own genome (and that of his fellow racial engineers) does indeed have some sort of sanctity to it, giving them the right to pronounce what forms of life are worth keeping around. He would be nearer the truth if he realized that the real sanctity and dignity accrue, not to a set of molecules, but to his innermost and truest self, which cannot easily be judged in terms of the material "accidents" of his existence.
Then, however, he would also have to grant that, at the level of this inalienable self, there is no comparing the "value" of persons. At least a vague sensing of this truth lies behind the fundamental political doctrine of equality before the law. It doesn't require any very elaborate reasoning to see that Watson and company have, in their own minds, already scuttled this doctrine. They are measuring the worth and potential of human beings by reducing them to the terms of mechanisms and there is no doubt that mechanisms, when they prove defective, can require discarding. The destructive implications this thinking holds for democracy need more attention than they have yet received.
Take it with a grain of salt if you like, but my own surmise about the new, materialistic mysticism that speaks glibly of Metaman and spiritual machines and digital immortality is that it arises from fear. I mean the fear that we may not be just our molecules, or just the patterns of organization imposed on our molecules. Why is this a fearful prospect? Because it would mean we bear within ourselves the real burden of the future of the human race, not merely the pleasurable "burden" of philosophizing about it and tinkering with its objectified exterior. We bear this real burden, first of all, in our choices about what we ourselves will become, and then through our share in what those around us become.
I believe we will be in serious trouble until we realize that the future human being can be shaped only from the inside is now being shaped from the inside, even as we are distracted by our high-tech toys, busily envisioning how to program the DNA of a better human being. The best hope for the misshapen human being resulting from our distraction may well prove to be the Adams of the world.
Finally, I am not saying we lack all justification for calling the Down syndrome child "abnormal" or even "defective." Surely these words point to a truth of the matter or, at least, they can if spoken with love and an awareness of our own extreme defects. Further, an awareness of what is defective naturally leads us to consider remedies must do so. If, as I said above, human life is about overcoming limitation, one should not say in advance what methods we might fruitfully bring to bear on the task up to and including genetic engineering.
The range of our moral responsibility, however, is determined not only by the range of our power to act, but also by the extent of our understanding. Our first responsibility is to recognize the limits of our understanding and the true springs of our actions. The foregoing remarks are intended, not to close off future possibilities, but only to suggest how deformed much of the engineering-oriented, futurist thought about these matters currently is. It is deformed because it ignores both its own limitations and its motivations.
If you want a guideline for dealing with the defects of others, your best bet is to consider how you respond to the defects of those you love most deeply. This won't immediately answer all the hard questions. But it's a good place to begin asking them. As Martha Beck writes, "Whoever said that love is blind was dead wrong. Love is the only thing on earth that lets us see each other with the remotest accuracy."