The Wisdom of William Hurlbut on Genetic Disability

Medicine moved from being a relatively ineffective profession at the end of the nineteenth century to starting to have some really effective interventions. And this led us from the realm of care and comfort to the realm of treatments. And then, logically, treatment became early diagnosis and preventive treatment. And preventive treatment then became prevention of any symptoms with whatever interventions you could do, which is all very, very good and I think is a realm of medicine that still needs to be expanded.

But there is this strange shift in this process that moves from a focus on compassion and a focus on the deep human realities of what’s happening to a much more mechanistic and social perspective on the phenomenon such that you relatively quickly in your inner mind, your general personal psychology and social attitude, move from prevention to a—I don’t know quite what the right word is, but it’s a preemptive disposition.

And I’m personally concerned about this because it’ll take us time, and as a human civilization we’ll mature into this new knowledge. But one thing we need to bear in mind in this process—and we could bring this out in a report, I believe—is the depth of the human meaning of all of this, the importance of sustaining the fundamental core of what medicine and, of course, all of individual and social life is. It’s a human, personal process and a collective process that we are not products, and our children should never become products.

We are processes and journeys, and these journeys are inevitably going to involve a dimension of suffering and, as we pointed out in our other reports, frailty and ultimately finitude. And this kind of knowledge that we’re entering into could change not just the general character of our culture but our internal experiences of what life is. I’ve had some experience personally with raising a handicapped child, and whereas I never would have chosen—never in a thousand years would I have chosen and could I have avoided it I would have in the positive sense of avoiding by doing something positive to make my child not handicapped.

But nonetheless, I have to say that having gone through this personally, it became clear to me very quickly it was an invitation to go deeper into the heart of life. There are positive dimensions to the humanness, the deepening and enriching of human purpose, the self-giving and the generosity that is involved and the rich human relations that come from imperfect people interacting with each other. We have to be very careful we don’t move from compassion to a cold preemption in all this.