Majority of Teens Value Results of Genetic Tests to Inform Future Life Decisions; Survey Conducted by Cincinnati Children’s Hospital; Findings Reported at ASHG 2015 Annual Meeting

The majority of adolescents in grades 7-12 would prefer to know the results of unanticipated findings found in whole exome sequencing genetic testing, even if the findings are not medically actionable until adulthood, according to survey data presented on October 9, 2015 at the American Society of Human Genetics (ASHG) 2015 Annual Meeting in Baltimore. The survey addressed secondary findings – genetic findings unrelated to the initial indication that prompted the test – gleaned from sequencing the protein-coding regions of a person’s genome. “Whole exome sequencing in minors can potentially reveal an elevated risk for a condition unrelated to the initial reason they underwent genetic testing, and there may be no medical intervention to mitigate that risk until adulthood,” said Sophia Bous Hufnagel, M.D., a pediatric geneticist at Cincinnati Children’s Hospital Medical Center and first author on the study. “Some people prefer to know about these secondary findings anyway, while others would rather not know,” she said. Clinical guidelines urge physicians to counsel adult patients through choosing which types of secondary findings, if any, are disclosed to them. For minors, however, the consensus has been to discourage disclosure, except in rare cases. “Some argue that disclosing such findings to teens would take away their right to decide later, as an adult, what they want to know. Many people also felt that disclosing results to children may cause psychological harm, especially when there are no prevention or treatment options available until adulthood – that you should just let a kid be a kid,” Dr. Hufnagel explained. “Others argue that a truly non-actionable finding does not exist and that knowledge of such results, despite available treatment options, has value and benefit in itself.
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