Study Reveals Public’s Ignorance About Genetic Therapy, Testing

Seven out of 10 Americans say they know “relatively little” or “almost nothing” about genetic testing, according to a survey released today.

An even larger number--86%--knew nothing about gene therapy, a field that San Diego researchers are hotly pursuing.

For scientists here, the survey results were like a splash of cold water--somewhat startling, though not unexpected.

“I expect that’s typical of the general level of understanding about a lot of scientific issues,” sighed Dr. Theodore Friedmann, professor of pediatrics at UC San Diego’s School of Medicine and a pioneer in the field of gene therapy.

“This is a relatively new field of medicine and science,” Friedmann said. “It wasn’t discussed when many people who responded to the poll were learning their science in school. It also says the science they do learn in school is probably not adequate for modern times.”

The nation’s first survey of public opinion on human genetics showed that most Americans support the use of gene therapy to battle diseases and support research in the field--even though they know very little about it.

Genes are packets of biochemical information that provide a map for the body, directing it to develop and function in particular ways. Each person inherits from his parents thousands of genes, which are arranged on the body’s 46 chromosomes. The genes control growth, body chemistry, as well as exterior features such as hair and eye color.

Gene therapy is a medical procedure to treat a disorder or disease by restoring or replacing a faulty or missing gene in a person’s body. This approach to medicine is the way of the future, many scientists say. In this way, doctors would be able to correct a problem before the symptoms are even manifested. But the therapy is still in experimental stages, with few people actually undergoing gene therapy treatments.

“It will have a major role in medicine in the future; the general idea of gene therapy is highly accepted in medical and scientific communities, even though it hasn’t had a major test or proven itself yet,” Friedmann said. “You don’t need a crystal ball, it’s just common sense.”

The survey of 1,000 adults nationwide was conducted by telephone last spring by Louis Harris & Associates for the March of Dimes, which finances a lot of research in the genetics field.

Dani Montague, executive director of the local March of Dimes chapter, said the group was startled by the public’s relative ignorance about genetics.

“There’s a real need for education,” she said. “People understand there are problems out there that are a result of genetic birth defects. If children can be made healthy through gene therapy, then people understand that it’s worthwhile.”

In fact, a 4-year-old girl was the first recipient of gene therapy. The child lacked an immune cell enzyme whose absence leads to severe immunodeficiency. In late 1990, at the National Institutes of Health, she received cells carrying the gene that she lacked. Today, it appears that the therapy worked.

Clearly, gene therapy offers a different approach to medicine: curing the body from within and preventing symptoms from developing. And some scientists believe that, when they begin tossing around terms like “genes,” people’s eyes begin to glaze over.

“People basically turn off, they think this is not within their field of comprehension,” said Dr. Inder Verma, professor of molecular biology at the Salk Institute. “When they think about genes and genetics, they think it’s too complex because there hasn’t been enough education in high school or later.”

Nonetheless, though they may not fully comprehend the principles, people support the notion, according to the survey. Here are the key findings:

* The majority of Americans, or 89%, approve of using gene therapy to treat genetic diseases.

* Eighty-nine percent favor continuing research in the field.

* Eighty-eight percent are willing to have gene therapy performed on their children, and 79% were willing to have it performed on themselves.

* Eight of 10 Americans said they would take genetic tests, before having children, to learn whether their offspring would inherit a fatal genetic disease.

* Two of three Americans said they would endure a test during pregnancy (or during a spouse’s pregnancy) to learn whether the fetus had a genetic disease.

* Nearly three-quarters believe gene therapy should be governed by strict regulations.

* Fifty-seven percent say that, if a person is a carrier of a defective gene or has a genetic disease, then someone else deserves to know about it. Of those, 98% say a spouse or fiancee is entitled to that information, 58% think an insurer should be informed and 33% say an employer should be informed.

To scientists working in the field, the survey only spelled out the need for more education among the public.

“It’s new, and people haven’t been exposed to it. It’s too new. And it’s new in the sense that there has never before been anything like this,” said Dr. Errki Ruoslahti, president of the La Jolla Cancer Research Foundation. “Now would be a good time to develop some understanding because this is a methodology that is coming.”