Designer Genes and the Illusion of Progress


July 29, 1992|By A. ZOLAND LEISHEAR

I am involved in a project that makes my hair stand on end. It is a co-operative effort between a research group and an HMO to offer genetic screening. The testing will afford members the opportunity to determine if they are carriers of a particular childhood disease. It is not only this project, but the whole idea of genetic research that I find terrifying.

On the face of it, this project seems benign. After all, it offers a service, free, that will enable prospective parents to determine if they are the carriers of a highly debilitating disease. Why would you not want this?

Currently some genetic screening is available. Since prenatal intervention is not possible to cure or mitigate the problem, prospective parents are left with the choice of carrying the child to term or terminating the pregnancy, or avoiding pregnancy altogether.

As more and more screens become available, parents will have more and more opportunities, to face more and more life-and-death decisions about their children. Future parents will be able to read through the genetic map of a future child and determine if that child's life will be worth living. If no prenatal intervention is possible for whatever problems are foreseen, then the only decision left is whether to abort the fetus.

The underlying assumption is that biology is destiny and, based on that alone, that some lives are not worth living.

We are on the edge of an explosion of knowledge in genetic engineering. Various universities and medical institutions including the genome project at Hopkins have received billions of dollars to conclusively map out the structure of the human genetic blueprint. Put simply, this research's aim is to identify and locate every human gene.

I do not believe that this is pure research, i.e., research for the sake of research, and indeed I believe it naive to think so. Rather, it is a step in a process that will give scientists the knowledge and the power to alter genetic material. The issues here are more then scientific, they are moral and philosophical. They go to the very core of our being.

The scientific and medical communities obviously feel that Down's syndrome or cystic fibrosis are legitimate reasons for an abortion. What if they discovered a gene for early-onset cancer, alcoholism, homosexuality? What about non-conformity? Non-conformity certainly has wrought as much havoc as any of the others.

Will they also have tests to screen for the gifts these afflicted individuals might have to offer? Gifts that may not be genetic in origin but may spring from coping with the very defects the scientists are wishing to eliminate. What of the rewards that often, though certainly not always, come when one triumphs in a life in extremis?

At present, what to do with this knowledge is left to the parents. Parents often elect to have children they know will have certain problems, but I wonder how long this will last. As health costs spiral out of reach, how long will insurance companies continue to allow people to have children requiring extensive and long-term care? Genetic screening will become an opportunity to establish pre-diagnosed conditions.

If you think health-insurance companies are more humanitarian than this, then think only of the difficulty, if not the impossibility, of getting health insurance as an adult when you have had cancer as a child. Money is the bottom line. To borrow a line from the phone company, ''It's just business, nothing personal.'' I can only wonder where they will draw their lines between the acceptable and the unacceptable and what price society will pay for their choices.

But there is more to this than the burden of choice, or who will pay and in what manner. More even than the consequences a genetically engineered society might bring. (Look only to the side effects of the internal-combustion engine; who dreamed of its destructiveness?) These issues require discussion and evaluation now, not when the genetic nightmare is already upon us; yet the issue here is deeper than a specific project. As I said, it goes to the core of our being, to the nature of life itself. We need to evaluate more than the design of our genes.

One of the side effects of being an American, of having the American Dream, is the sense of entitlement it engenders. We have a long history of this.

Back when we were all Englishmen, we thought we had a right to come here, to settle this land, to drive off anyone who dared stand in our way. They were impediments, obstacles to be overcome.

As we grew and industrialized, we were entitled to enslave people, whether in chains or in sweat shops, to take whatever we wanted from the earth, to spew back whatever waste we produced; and this was fine because it was progress. We were not supposed to suffer, we were supposed to have what we wanted.

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