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The Community Genetics and Ethics Project (CGEP) is a three-year effort to prepare Vermont to deal with how we view ourselves and others...funded by the Ethical, Legal and Social Implication (ELSI) program at the National Human Genome Research Institute.
Between March of 1998 through February, 2001, Vermont clergy, mental health professionals, teachers, primary care providers, public policy leaders and others have and will be attending a CGEP retreat to discuss the ethical, legal and social implications of the new genetics. This is a program of the Vermont Human Genetics Initiative through the University of Vermont College of Medicine, at this time being led by Alan E. Guttmacher, M.D., Edward J. Mahoney, Ph. D., and Roy E. Cutler, M.S. The Human Genome Project's current target date for sequencing ALL human DNA is the year 2003!
I found myself surrounded by social workers, counselors, newspaper and publication editors, and Abenaki and Ojibway Indians at a three day retreat at Rock Point discussing how revealed gene clusters should be "legally engineered." "Isn't it wonderful to now know that a gene on chromosome 17 causes the inherited form of breast cancer? Now we can prepare ourselves for early treatment," said one enthusiast. "Great," said another, "but what are we going to do about cloned human embryos nurturing in Petri dishes all around this country?"
Some of the genetic disorders that can be detected before birth are cystic fibrosis, Down syndrome, muscular dystrophy, Huntington's disease, sickle-cell anemia and many more. Even if parents-to-be view the genetic profile of a fetus...what then? Should a fetus be aborted or a loving Down syndrome child be brought into the world?
If you think we have trouble now finding our way to good health insurance, think of what genetic testing could mean to health insurance companies about your susceptibility to diabetes or breast cancer. Only 30 states have passed laws prohibiting genetic tests of applicants for insurance or jobs. We can already predetermine a baby's sex. Will we continue to choose our baby's height, weight and intelligence? Our present faction-fighting over abortion will disappear into the ethical issues of emerging gene techniques.
Copies of a gene have been injected into a dying man's failing heart causing new blood vessel growth. This 58 year old man now actively works a ranch free of all previous heart medication. But adding genes to cells can also give different functions to these cells leading to other disorders. Should the government regulate gene therapy?
Have you ever thought of what it might be like to live with yourself? Cloning can "produce" this scene, but human personality will be different caused by the effects of both original genes and also by environmental effects.
There is evidence that heredity is important in "high intelligence", but it is certainly not all important. Genes account for about 50% or more of the variance in IQ. All you need to do is see the movie produced by Danny DeVito called GALACTACA to remind you of the human personality's will to achieve against tremendous odds.
CGEP has a difficult task. After ten retreats, there will be a number of discussion groups. Then there will be ten Community Forums. Logistical support will be given to interested participants willing to create a Discussion Group. These discussion groups could be sessions at a high school class or an adult education class or library-booked based discussions....held in various regions of Vermont. From these discussions a project report will be prepared and distributed to all major groups and interested parties in the state. Vermont "could" be a first to develop a national model for meaningful, community-based discussion of Ethical, Legal and Social Implication issues.
