Many parents would get gene tests for kids: study

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If given the chance, many parents would test their children to see if they are genetically predisposed to diseases like diabetes or heart disease, U.S. researchers said on Monday.

And as most parents expect a positive result, they might not be prepared for the answers they get.

“These tests usually don’t offer a clean bill of health and can be hard to interpret even in the best scenario,” said Dr. Kenneth Tercyak of Georgetown University Medical Center, whose study was published in the journal Pediatrics.

The study is among the first to look at parents’ perceptions of genetic testing of their children, and it raises new questions about direct-to-consumer genetic tests, which have already raised concerns among U.S. lawmakers and regulators.

“The findings of our study should remind clinicians and policy-makers to consider children when regulating genetic tests,” Tercyak said in a statement.

Several companies—including Decode Genetics’ DeCodeME based in Iceland, 23andME in which Google has invested, and privately held Navigenics—sell tests online that allow people to learn if they have inherited risk for disease.

Unlike genetic tests ordered by doctors, genetic tests sold directly to consumers give people information about potential health risks online or in the mail. Regulators are worried people may not understand the limitations of the tests.

To find out parents’ attitudes about genetic testing, Tercyak and colleagues surveyed 219 parents who were offered a genetic test that looked for eight common health conditions including colon, skin and lung cancers; heart disease; High cholesterol and type 2 diabetes.

RISKS AND BENEFITS

Parents in the study answered questions about the risks and benefits of testing for their children and whether they were interested in having their child tested.

“The study showed that there might be significant parental interest for doing this kind of genetic testing in their children,” Tercyak said in a telephone interview.

Even after making it clear to parents that there is no proof genetic testing for common health conditions has any use, parents were still interested in having their child tested, the researchers said.

And the parents who were the most enthusiastic were the ones who thought their child’s test result would be positive, which the researchers said is unlikely.

“Most people are going to learn they are at somewhat elevated risks for something,” Tercyak said.

He said some direct-to-consumer companies discourage the testing of minors, but others will process such tests.

Dr. Uta Francke of 23andMe said the company does not advertise testing of children but does not prohibit it.

“We allow parents to have them tested if they wish and take the responsibility of protecting and using the information,” Francke said in a statement.

Francke said if testing a child revealed a risk for obesity, heart disease or skin cancer, preventive measures such as following a healthy diet and using sunscreens might be taken more seriously.

But Dr. Roya Samuels of Cohen Children’s Medical Center in New Hyde Park, New York, who was not involved in the study, said there is no proof that testing children will do any good.

“Although early testing of children might motivate parents to take healthier steps now to prevent these conditions, the genetic tests have not been proven to prevent or reduce bad health outcomes,” Samuels said.

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By Julie Steenhuysen

CHICAGO

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