LAKEWOOD, COLORADO — Lakewood, Colorado.
LAST FALL, my wife Jesse and I received confirmation of a tragedy we had been dreading. We learned from a predictive genetic test that our unborn child had a 90 percent chance of developing Huntington's disease, a brain-destroying disorder that killed my grandfather and drove my father to suicide.
tTC Suddenly, my wife and I found ourselves facing the most complex and agonizing decision a prospective parent can face. We had to choose between letting our baby grow up destined to die of a long and devastating illness -- or not letting him grow up at all.
Of all the known hereditary diseases perhaps none generates more raw terror among those at risk than Huntington's disease, a neurological disorder whose most famous victim was Woody Guthrie.
For those who have it there is simply no escape. No cure. No treatment to alleviate its awful effects. Death sneaks in covertly, like a viper through a crack in the basement wall. Once present it is implacable. The outcome, inevitable. Over a period of years the victim loses the ability to speak, eat or walk. The face grimaces, the tongue darts in and out, the torso writhes and limbs flail faster and faster until the body becomes a horror of grotesque, uncontrollable movements.
My grandfather died at age 52 not of Huntington's but of virtual starvation. His convulsions were so violent, so relentless he could not be fed enough to prevent malnutrition.
My father, overwhelmed by despair when he could no longer work, was found inside our closed garage, the car engine running. Dead.
For weeks, Jesse and I went through hell trying to decide what to do. Night after night we lay awake in bed, enmeshed in threads of guilt, sadness and uncertainty.
I had lived all my life with the nightmare of being in a Huntington's family. Jesse and I agreed not to have children when we married. The pregnancy was unplanned, yet after 11 years of marriage it was a child we desperately wanted.
But how could we condemn a child to such a fate? On the other hand, who were we to deny him the 30 or 40 good years before the disease would take its toll? How long must a life be to justify either allowing it to live, or aborting it?
These questions challenged the very meaning of life and the answer, we realized, was beyond our moral grasp. We sought help among ethicists and counselors, but soon learned of the intense debate within the professional community over the same question. Some felt that, because the disease will not appear until later in life perhaps by then there will be a cure or at least treatments to mute the symptoms of the disease. Others, like some at Johns Hopkins Medical Center, feel that abortion for even the slightest of risks is justified.
Frustrated and desperate, we searched for what we needed most, to find people like us, other Huntington's families who either had faced, or were facing, similar dilemmas. It was then we discovered, much to our shock, just how alone we were.
Several years ago, before the genetic test for Huntington's disease became available, a poll of the approximately 125,000 people at risk in this country was taken. It revealed that nearly 80 percent would take the test if given access to it. Today, more than four years since the test has become available, it has been estimated that fewer than 500 individuals have actually taken it.
Why? Certainly one reason is that, so grim is this disease, many decided they could not bear to know if they had the gene, and thereby know their fate.
But a second explanation is far more troubling. Acording to some experts in the field, thousands are holding back because they are frightened they will lose their health, life and disability insurance, and that they will lose or be denied jobs for which they are qualified.
These fears are far from baseless. Historically, health insurers have used new technology to identify pre-existing conditions as a basis to deny coverage. Already there are stories of individuals being terminated the moment news leaks out that they carry the gene, even though they showed no signs of actually having the disease.
So frightening is Huntington's that tens of thousands live in daily terror that a stumble or misspoken word may signal the advent of the disease. Many refuse to marry or have children. Yet Nancy Wexler, a well-known researcher in the field of hereditary disorders, estimates that if they could brave the financial and social risks involved in taking the test, at least half of those at risk would learn they did not carry the gene and would be free to lead normal lives.