MIAMI -- Would you want to know you had a gene that was a biological time bomb, that would allow you to live a normal life until sometime between age 35 and 50, when your body and brain would begin to deteriorate?
That is the question facing people with a history of Huntington's disease in their families.
James Gusella, the Harvard University researcher who made the genetic discoveries that led to a test for Huntington's, said many people don't want to know because there is no cure.
Those who do find out have a seven-fold increase in suicides.
Gusella spoke at the University of Miami School of Medicine yesterday about his discoveries, and took part with other researchers and geneticists in a discussion of the ethical questions being posed by the rapidly expanding information on gene-related disease.
"Genetics is a component of all disorders," he said.
Genetics will be become so important in American life and health care, that every child should begin learning about it in elementary school, and doctors now practicing medicine will need to be retrained, Gusella said.
"There's a tremendous need for genetics counselors, and there will be an even greater need, but a great deal of this will have to come from doctors in practice right now," Gusella said.
And while discoveries of the genes that cause disease can possibly lead to treatments, there are a variety of ethical questions confronting geneticists and other physicians in the meantime. The panelists posed a number of questions, but there were no easy answers.
"If you've identified a woman with a [breast cancer gene] mutation, what do you do about the rest of the family?" asked Dr. Karl Muench, a UM geneticist. Is it the doctor's responsibility to track down and notify sisters, mothers, daughters that they may also carry the gene? What about the issue of patient confidentiality?
And if people decide to be tested, should they ask their insurance company to pay for the test? Some genetics counselors recommend that people pay for it themselves, because if an insurer discovers you might have a serious health problem in the future, you could lose your coverage, panelists said.
Pub Date: 2/26/99