Imagine your father's hands begin trembling. In good health his entire life, he now cannot stop shaking, slurs his speech and is depressed and irritable. Fearing a stroke, your father goes to the doctor and is diagnosed with Huntington's disease, a neurological disorder. There is no cure, and it is fatal.
A single defective gene causes Huntington's disease. It is a dominant gene mutation, which means a person whose parent has Huntington's disease has a 50 percent chance of inheriting the disease.
The individual can undergo a genetic test to see if he or she has the gene. If so, the person will get the disease and probably die from it. The question this person has to answer is: Do I take the test?
Welcome to the world of genetic testing. On April 22 and 23, members of academia, industry and the community gathered in Madison for the Third Annual International Bioethics Forum held at the BioPharmaceutical Technology Center.
The forum examined the connection between genes and disease, the ethics of genetic testing, and the scientific and social complexities surrounding these issues.
Hank Greely, professor of law at Stanford University, said in early genetics research scientists looked for and found the defective genes for rare genetic diseases such as Huntington's disease. With such diseases, a person with the defective gene would inevitably get the disease.
Scientists believed they could use this same technology to predict whether people might be at risk for more frequently occurring medical conditions.
\It looked like genetic testing was going to expand from rare to common diseases,"" Greely said.
Instead, scientists found the development of many diseases involved an interaction between gene variations, the environment and chance.
Greely said a genetics revolution is currently underway.
""When you are in a revolution, you don't know what is going to happen. I think the genetic testing revolution is going to be really complicated,"" Greely said. ""For the vast bulk of the population, it's going to be an issue of probabilities.""
UW-Madison law and bioethics professor Alta Charo said, ""I love the fact that no matter what you think, you are going to be wrong. Information becomes fuzzier and fuzzier even as we have more of it.""
She added the ethics of personal decisions and the societal collective good have ""become the central issue in the bioethics cultural war.""
Previously, Charo said, bioethicists debated the government's power to regulate public morals.
""Mere moral disapproval is not going to be enough for the government,"" she said. ""Now we must ask a more difficult question: Who is harmed, and what state institutions are involved?""
Justin Hoshaw, a UW-Madison freshman who attended the conference, said he thinks about the impact of genetic testing on the public.
""The population in general doesn't know enough about the topic,"" he said, ""and I'm afraid they'll make the wrong decisions.\
