Gen-Etiquette
Scientists may be mapping the genome, but it will be up to us to determine where the map will lead
Lori B. Andrews | posted 10/01/2001 12:00AM
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Knowledge of Good and Evil
Genetic testing generates information unparalleled in scope compared to other areas of medicine. People can learn that, decades later, they will suffer from an untreatable disorder, that they have an increased risk of cancer, or that their children have a one-in-four chance of dying of a serious disease. This knowledge has a profound effect on people's lives by challenging their self-image, by altering their cultural and social identity, by changing their relationships with family and friends, and by causing them to think about their life, health, and responsibilities in new ways.
Gene Civilities
Genetic testing also reveals genetic risk information about a person's relatives. As a result, family relationships are changing. A parent and a child have half their genes in common, as do siblings. Cousins share one-quarter of their genes, as do grandparents and grandchildren. Family bonds raise new and profound questions of "gen-etiquette," questions of the moral obligations to relatives that may be raised by the acquisition and disclosure of genetic information. If a woman learns she has a genetic mutation predisposing her to breast cancer, does she have a moral or even a legal duty to share that information with her sister? What about an estranged cousin?
Testing children raises difficult questions about whether parents should be able to learn genetic information about their children and whether it will cause them to treat the children differently. Genetic testing has become routine during pregnancy. Some parents set admission standards for birth—using genetic testing and abortion if the baby is of the "wrong" sex. Other parents seek genetic testing of existing children. A few years ago, a mother entered a testing facility with her two young sons. "I'd like you to test my sons for Huntington's disease," she said. "I only have enough money to send one to college."
As technology evolves, parents-to-be will have even more control of the traits of their offspring. In various surveys, some potential parents have already declared they would use genetic engineering on their children to make them smarter, to upgrade them physically, or to determine their sexual orientation. Those who want to cash in on meeting these desires are already lining up: With around 4 million births per year in the United States, a market for prebirth genetic enhancement may be almost as large as that for Prozac or Viagra.
Should parents be able to buy height-enhancing genes for their embryos? Will that be viewed like cheating in sports, or more like enrolling your child for private tennis lessons? Should the government be allowed to vaccinate embryos with certain genes? And what about putting genes in human embryos for traits people never had before, like the running speed of a cheetah or the ability to photosynthesize? Already lawyers are asking whether constitutional rights extend to humans who would have extensive animal or plant genes. One lawyer/doctor who was asked when constitutional rights apply said, "If it walks like a man, quacks like a man, and photosynthesizes like a man, it is a man." The very boundaries of what is human are being changed by technology.
Princeton biologist Lee Silver paints a chilling picture of our genetic future in his book Remaking Eden (Avon, 1998). He predicts that since the rich will be able to afford genetic enhancement and the poor will not, humans will actually evolve into two different species—the GenRich and the Naturals. These two groups will be so distinct biologically that they will not be able to produce children together, Silver writes.
We're at a pivotal point in history. Reproduction is being turned into a more mechanical form of production, and people in settings ranging from the family to the workplace are beginning to be treated as no more than the sum of their genes. We're the generation that will decide whether that trend will be hastened or derailed.
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