THE "BOOK OF LIFE"
A Scanning probe microscopic image of human chromosomes.The human genome has been called the "Book of Life," as it contains all the genetic material that pertains to an individual. Scientists for the first time have recorded the raw data for the human genome, and the questions arising from the ability to alter our genetic code are many and complex. It is hard to imagine a more important and far reaching technological breakthrough than the mapping of the human genome. "While the genome project looks like a technical achievement to be celebrated only by people with very thick glasses and pocket protectors, it's the start of an intellectual revolution that will touch our everyday lives, on a regular basis, for decades," said Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania School of Medicine.
It is also hard to imagine a more complex moral conundrum. A whole host of medical, business, ethical and legal implications surround the mapping of the human genome and future genetics. "Efforts to improve the inherited genome of persons might . . . foster attempts to have perfect children by correcting their genomes." claim the American Assn. for the Advancement of Science in their September 2000 report. Should we play God with our genetic futures? Should we tinker with our genetic code? Are human beings "perfectible"? This clashes with certain established religious beliefs. As the Westminster Larger Catechism, written in 1649, proclaims: "Original sin is conveyed from our parents unto their posterity by natural generation, so as all that proceed from them are conceived and born in sin."
New technology confronts us with new problems. What shall we do?
Questions to keep in mind: What is the "genome?" Why is it important? What is the Human Genome Research Project? What is a genome? In mapping an individual's genome, what practical information does that give a person? What difference can that make in a person's health? What is meant by "mapping and sequencing" the human genome? What are the potential benefits of this research? What exactly is DNA? How did the research idea get started? Has the research focused only on humans? What role has technology played in the research? Why were there two competing groups working on the human genome? Are the findings identical? Is this the end, or just the beginning? Why? What is next? What does the future of genetics hold? What are some of the medical, business, ethical and legal implications of the mapping of the human genome? Should people be tested to determine whether they might later develop a disease if there is no cure for that disease? Should fetal genetic testing extend beyond the health of a baby to screen for desirable physical and mental traits? Should we love "imperfect babies"? Should we even have them? Who owns the information created by sequencing the genome? Will the tests created to identify mutations lead to discrimination against those who are perceived as genetically flawed -- and can we prevent that from happening? How far should we go in using gene therapy to correct the "genetic defects" we discover, and who should have access to this therapy? How can we protect the rights of the genetic innovators as we preserve the public nature of the information they use? How can drug companies use genetic information to make more effective drugs? How is privacy threatened? What are the legal issues? If your employer and insurance company had access to such test results, would you be concerned? Do DNA databanks violate the rights of defendants? Can a company own information on genes? Can a company patent the genome for private profit? Do companies deserve compensation for research? Should companies be able to use findings on the human genome for profit? Does gene therapy have harmful side affects? Has anyone died in gene therapy? How can gene therapy affect a person's health? How could discrimination arise from genetic testing? Why are some commentators reporting that simply mapping the genome is nothing but a start? What is "germ-line modification"? Is this "hubris" (ie excessive pride)? Is it possible to have a new and better "human being"? Should humans demand and expect genetic enhancements? What ethical issues revolve around "genetic engineering?" If you could choose the gender and physical characteristics of your baby, would you? If you could create a designer "super-baby" through genetic engineering, would you? If we begin breeding for certain attributes, such as beauty or intelligence, and some people can buy those attributes and others can't, should we be concerned about whether being able to buy these enhancements would be good for society as a whole? Or is it a matter of individual choice? If a simple test could tell whether you are likely to have inherited any serious diseases, would you take it? Is character shaped more by genes or by environment? Which is the key to a person's health and happiness: heredity or environment? Are there certain diseases that everyone would agree should be eradicated, if possible? What about other conditions that people have that many don't consider desirable, yet those afflicted with still lead happy and positive lives? Will the disabled community be further marginalized, if everything but a narrow norm is engineered out of existence? What is "genetic determinism"? What are the dangers of "genetic determinism?" What about "germline engineering? Is there a gene for "criminality"? Can crime be reduced by genetic engineering? Is there a gene for low IQ? Can low intelligence be reduced by genetic engineering? Could the focus on genes make us stop looking at environmental factors and societal stresses as causes for diseases or behavioral problems? Can social problems be resolved through genetic engineering? Do the discoveries of genetics mean we must also not retreat from our oldest and most cherished human values? Will the new genome science and its benefits will be directed toward making life better for all citizens of the world, or just for a privileged few? In the United States we are all created equal and entitled to equal treatment under the law. Will greater understanding of the genetic information of each citizen's genetic code change that? And are genetics destiny? Should humans take charge of their evolution? Will who we are (and all we are to be) ultimately be seen as based solely on billions of bits of DNA instead of on free will--our power to choose? Are we what we choose to do and who we work to become? Is it about the goals we set for ourselves and the way we behave? Or is our fate sealed at fertilization in our genetic make-up at the DNA level? Are genetics dangerous? In deciphering the component parts of own biological programming should we humans celebrate a triumph? Or should we be scared for our future?
GENOME RESEARCH
Biotechnology and Genetics at Yahoo!
The National Human Genome Institute
What is the genome and what do we do with it?
"The Human Code Crackers" In depth from the BBC. Also, About: Biotechnology.
"Mapping the Human Genome: The Search is Over" and The Genetics Revolution, both from Time Magazine.
