Gene testing offersBy Helen Altonn
Paula Gregory, a nationally recognized genetics educator, says she doesn't know what she would have done if a prenatal test six years ago had shown something was wrong.
Although her profession involves helping people understand genetics and risk assessment tests, she said it never occurred to her to question what might happen after her test.
"Luckily, I didn't have to decide," said the mother of two healthy daughters, stressing the importance of people being prepared for the results if they want genetic information.
Gregory directs outreach and education for the Human Cancer Genetics Division at Ohio State University.
She was among stars in the genetics field attending a conference on genetics and molecular biology sponsored by the Queen's Medical Center and Ohio State University James Cancer Hospital this week at the Hilton Hawaiian Village.
Among the others were:
Dr. Robert Gallo, director of the Institute of Human Virology in Baltimore, noted for leukemia and AIDS discoveries, who was twice awarded the Albert Lasker prize for medical research.
Dr. R. Michael Blaese, chief, Clinical Gene Therapy Branch of the National Center for Human Genome Research, involved in the world's first gene therapy treatment for children.
Dr. Albert de la Chapelle, director of Ohio State's new Human Cancer Genetics, who led a research team that identified a mutated gene important in the development of inherited colon cancer.
Gregory has received two National Institutes of Health Awards for innovative genetics educational programs. She is on the education committee of the American Society of Gene Therapy.
Gene therapy is "still a little baby," but there will be a lot of discoveries, for prevention as well as treatment of diseases, she said. She advises families to compile their medical histories. "It may not be important today but it will be important to grandchildren."
People are working on many diseases that could be treated by delivering genes through blood, she said, adding that this has "huge, really huge, potential."
Gregory expects increasing use of genetic tests, raising issues of confidentiality and affecting family dynamics, since families share genes.
"There is a lot of controversy. How do people, once they get the information, handle it over the long term? Does it drive them crazy or are they glad to know? We want to make sure people are prepared to get the information."
Genetics educators also are trying to debunk myths and change misconceptions, Gregory said.
For example, she said it's commonly thought that all breast cancer comes from the mother's side of the family and it's hereditary.
But the facts are that it could be from either side of the family and only 5 percent to 10 percent of all breast cancer is inherited, she said.
A combination of genetics and environment is responsible for 75 percent of all cancer, she said.
Anyone interested in genetics tests should call a genetics counselor, who will ask about family history and schedule a counseling session to discuss options if there is a risk, Gregory said.
A lot of information is needed to be sure the person is ready for a test and understands it, she said, noting one case in which a person wanted a test but waited two years to ask for the results.
Tests aren't done for every gene but for a disease or condition that may be a risk based on family history, she said.
But a gene chip is being developed which could contain 96,000 pieces of DNA, she said. "We can test for hundreds of genes at one time."
A gene chip soon will be ready for diagnostic use just for breast cancer, she said. It won't replace normal preventive and screening measures but will tell if someone "needs to be more diligent," she said.