Human Genome Project evolves
January 30, 2001
Genetic research is a topic that can inspire fear and awe with its implications. But to Spanish professor Mary Cozad, it’s just another step toward curing illnesses like cancer.
Cozad participated in the Gene Trust Program, which builds on genetic information learned in the recently completed Human Genome Project to study links between genetics and disease. The project’s goal was to map the human genome, uncovering all of the approximately 50,000 genes in human DNA.
The Gene Trust Program is a “database of family and health information that will further the understanding of the interrelationships between genetics, health and disease,” according to a DNA Sciences Inc. press release.
Cozad became involved with the program in August 1998, after being diagnosed with breast cancer in May of that same year. She read about the program in an issue of Business Week, and logged on to the program’s Web site, www.dna.com.
After taking a quiz on the site, the company contacted her with interest in studying her DNA because she is the only person in her family who was diagnosed with breast cancer.
Cozad explained that she was quite interested in the project.
“You have a disease like this, especially breast cancer, where everyone who has had it seems pretty active (in research efforts), and they want to help,” she said.
Cozad said for the most part, she didn’t hesitate to participate in the project.
“On their Web site, they promised anonymity of your genetic composition,” she said.
Cozad said one aspect that made her think twice was the idea of the company selling information about genetic predispositions to insurance companies. But because participants are assigned a number, and data is based on results from groups of people rather than individuals, Cozad said she thinks her anonymity is secure.
“This isn’t doing anything extraordinary with the information,” she said. “It’s just gathering knowledge, and it goes back to the 1600s, when people studied how blood circulates through the body.”
Mitrick Johns, an associate professor of biological sciences, said the project is beneficial.
“It certainly is a very powerful approach for finding genetic diseases,” he said.
Johns said privacy issues are a concern, because the project’s results could make it easier to find out who is likely to get a disease.
However, Johns said he’d be reluctant to participate in it himself.
“Do you trust the idea that someone guarantees confidentiality?” he asked. “I don’t.”
Johns said though he wouldn’t want to participate, he thinks privacy risks are worth gaining knowledge.
“The bottom line of it is, these things will lead to finding out how diseases occur, and maybe we’ll end up with cures,” he said.