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To Genome or Not Genome Eighth Toastmaster Speech Copyright, 2000 by Kurt Nemes Fellow Toastmasters. Today, our world stands on the brink of self-inflicted ruin. I’m not talking about the conflicts in the Middle East or the Balkans. Instead, it is a scientific revolution called the Human the Genome Project. The Human Genome Project promises it will supply, to anyone who wants—for a fee of course—the map of a person’s genes. The proponents of this project promise it will only be used for the good of mankind by helping to find cures for genetically determined diseases.However, what I’ve read about the genome project so far makes me think of something that 16th century French writer, Francois Rabelais said: “Science without conscience is but the ruin of the soul.” In French, the word “science” also means knowledge. It seems to me that if we don’t wake up and figure out how to handle the awesome knowledge from the genome project, we will one day lose control over our own lives. My speech today therefore has three parts. First, I’m going to tell you why I worry about the knowledge that decision makers will soon have at their finger tips. Knowledge about your and my genes. Next, I will present how this information might lead to events even more terrible than the various 20th century holocausts. Finally, I hope to show that the whole premise of the genome project is misdirected. To show this, I will describe, from my own experience, what decisions you might one day be forced to make (or have others make for you.) Not too far from my house, in Rockville, Maryland, scientists recently announced that they had fully mapped the human genome. Genes determine every human trait—for example, physical features, susceptibility to physical and mental disease, defects, among others. I really hope that we can soon put the lid back on this Pandora’s Box before groups like insurance companies, HMOs, politicians?and anyone else with an economic interest in having perfect specimens?start dictating which of us can live and which would cost too much to keep alive. At the turn of the last century, George Bernard Shaw championed the field of eugenics. He believed that intelligent people ought to be paired to breed a superior race of people. I think that the Human Genome Project is simply eugenics in a different wrapper. As Hitler, Pol Pot and Slobodan Milosovec have shown us, it's a short walk from eugenics to genocide. Is genocide too strong a word? Perhaps. But I am concerned that in the wrong hands, the knowledge from the Genome Project could lead to a-just-as-deadly cousin of genocide, namely forced euthanasia. Picture a world in which when every “designer baby” has the good looks of Brad Pitt or is as cute as Britney Spears. Now imagine this scenario. Let’s say you and your spouse are having a baby. You go for a genome test. The results show that your baby will have cardiac arrest at the age of 39. The doctors at your HMO counsel you to abort. Sound too far-fetched? Let me tell you a story. One day, 14 years ago, I burst into my apartment with news of a job offer. My wife, Judy, sat on the couch. She was three months pregnant. “I got a new job! Isn’t that great?” I shouted. She looked up with tear-streaked cheeks. “What’s wrong?” I said rushing to her side. “I just got the results back from the chorionic-villus sampling test.” “The chorionic what?” I didn’t remember ever mentioning this test. “CVS for short. It tests for Down’s Syndrome. Kurt, it came back positive.” I felt as if a ton of bricks had just fallen on me. Judy’s OB-GYN told us that CVS tests often show false positive. For that reason, she recommended Judy have an amniocentesis. That test is more expensive and invasive. For that reason, it carries a risk for the fetus. Amniotic fluid is drawn and the chromosomes are tested for birth defects. It also takes about 10 days for the results to come back, as opposed to three for the CVS. We asked whether we shouldn’t just do another CVS test. The doctor explained if the test came back positive again, she'd order an amniocentesis anyway. Time was running out, she told us. Judy was already in her second trimester. The longer we waited the more difficult the abortion would be, should we decide to go that route. Abortion? We hadn’t even considered that. We were trying to have a baby. It took about two weeks before we could have the amnio. During that time we lived in a state of perpetual anxiety, worrying about the decision we might soon have to make if the test came back positive for Down’s Syndrome. Fortunately, the amniocentesis test came back negative. Today that daughter, Claire, rarely even gets sick; she has just started high school; and she reads at a college level. I don’t consider myself a 21st Century Luddite. I don’t reject all of technology. It does seem however, that our medical system often takes the wrong approach. Doctors praise the triumphs of medicine. They use them to justify every area of research and every course of treatment. However, if you study the leading causes of death in the U.S., you find something very odd. [Please look at the next two slides] First we see that top ten killers in descending order.
The website where I got these figures also listed the origin or cause of these conditions:
It is well known that people have can have predisposition for many of these diseases. That’s the whole basis for the Genome research. But as you can see, the number of deaths could be drastically minimized SIMPLY through prevention, especially by changes in one's life-style. If so many of our diseases are preventable, why does so much health care money go into cures and relief of symptoms instead of to prevention? It puzzles me how it could be economically more cost effective to focus on mapping the human genome, when so many deaths have nothing to do with our genetic makeup at all. But here is my biggest worry. Let's say a person’s genome can predict that they will develop a certain disease at a certain age. Won't insurance companies--worrying about their bottom line--use that as a way of discriminating against people? What is to stop them from increasing rates for people in genetically high-risk groups? What if next week your insurance company looks at your genome. They tell you that you will develop such and such a lingering disease in several years. Furthermore, it will be too costly for them to insure you unless they increase your rates. Suddenly you don’t fit into someone’s ideal of perfection—which, after all, is an arbitrary and subjective concept. What’s more, you can’t afford higher insurance rates. What options do you have? [Let me ask you to consider one last slide] It shows some famous people who've had what some would call severely debilitating disabilities.
Image how culturally impoverished our lives would be had the Genome technology existed at the time of their birth. In conclusion, I would like to repeat that the human genome project represents an awesome knowledge. I also believe it's mis-guided. It has the potential for being used to discriminate against people. The world that we might one day livin in is as horrible as any science fiction novel. Finally, and most of all, we must be vigilant and make our feelings heard to those in power, lest those in business sway them, and we lose control of our lives. The scientist in the Human Genome Project promise their findings will benefit humankind. It will not be used to discriminate against people. Can we trust them? Well, last week, on if the project's leading scientists annouced an experiment that demonstrated the earth shattering benefits of the genome project. His accomplishment? He had succeed in genetically engineering a rabbit that glows in the dark. Sometimes I wonder whether too much knowledge is just as dangerous as too little.
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