People who are interested in having their genes tested also tend to be interested in having their children's genes tested, according to a recent peer-reviewed article. At first blush, this is not even a dog-bites-man story, it's more like a dog-barks-at-mail-carrier story. But it rapidly turned into a rather interesting exercise in public — and professional — education.
The study, published in Pediatrics, was a survey of 219 parents, who were offered a test for 15 genetic variants linked to 8 adult-onset diseases, including 3 cancers, heart disease, osteoporosis, high blood pressure and cholesterol, and type 2 diabetes. Then they were surveyed about their "attitudes and beliefs about the risks and benefits of the test for their child, their willingness to consider having their child tested, and other psychosocial variables."
This survey was not conducted by the direct-to-consumer (DTC) gene-testing industry, but under the aegis of the National Human Genome Research Institute, with researchers from major academic centers. And they were definitely skeptical about the value of the testing. This is lead author Colleen McBride, quoted in HealthDay:
"The more a parent believes they're going to get good news, the more likely they'll want their kids to be tested. But that can backfire. Most of them are not going to get a clear, straight-A report card. ... The big concern out there is these kids are going to show up at the pediatrician and say, 'Hey doc, what do I do?' Parents see more perceived benefits than may be true."
On the other hand, there is concern that if the tests suggest a child is at low risk for, say, high blood pressure later in life, then the family may not pursue the healthy habits that doctors would recommend. Said Dr. Robert Saul, incoming chair of the American Academy of Pediatrics' Committee on Genetics:
"The assumption is the tests are conclusive ... and nothing could be further from the truth. I thought it was an important study because it shows that we -- the medical genetics and pediatric communities -- have a lot of work ahead of us to impart information to parents to make sure genetic tests will be used appropriately and judiciously."
In other words, the report is a wake-up call to the medical community. Much more public education is needed about the interpretation of DTC tests. And this message came through loud and clear, in all the newspaper reports I've checked. Even a 3-paragraph squib like this included "concerns" and "questions." The headlines were generally bland ("Parents open to genetic tests for children") or even implicitly supportive ("Genetic Testing Could be Preferred Option for Parents"), but the content always included criticism &/or commentary:
"This is not something that most pediatricians are trained for, and, frankly, it could be a huge problem," says Marshall L. Summar, chief of genetics and metabolism at Children's National Medical Center in Washington, D.C. "We're trying to figure out how to gear up."
This considered approach was particularly true of the major outlets, such as Time, Reuters, the Wall Street Journal's blog, WebMD, the Los Angeles Times (which recently had a feature on genetic counselors) and CBS, which quoted Helen Wallace of GeneWatch UK from the BBC:
"Children should not be tested for risk of adult-onset conditions, full stop. They should be allowed to decide for themselves, with medical advice, when they are grown up."
First, of course, comes medical education. This little episode seems to demonstrate that the profession is becoming very aware of the need to learn more, in order to teach. That's encouraging.