Teens Have High Interest in Genetic Test Results

The majority of adolescents in grades 7 to 12 want to know the results of incidental findings found in whole exome sequencing, even if the findings are not medically actionable until adulthood, according to survey data presented at the American Society of Human Genetics Annual Meeting (Oct. 6-10; Baltimore, Md.). While evidence in teens’ preferences is limited, these results may indicate future acceptability of personal genetic testing.

“The bottom line is that disclosure of secondary findings to adolescents is a complex issue that should involve the stakeholder (the teen) as well as their parents or guardians,” said lead author Sophia Bous Hufnagel, M.D., in a statement. “While these decisions should probably be made on a caseby- case basis, it is important to have adolescents’ input when shaping the policies and guidelines that affect them.”

Clinical guidelines urge counseling of adult patients when secondary findings, if any are found. However, for minors the consensus has been to discourage disclosure in most cases.

The researchers from Cincinnati Children’s Hospital Medical Center administered a survey to 282 students (aged 12 to 18 years) attending three area public schools. The students listened to a short presentation on genetic testing and answered multiple-choice questions about their preferences for disclosure and the reasons behind them. The survey found that 83 percent of respondents said they would prefer to know about nonactionable results. The primary reasons for wanting to know were related to planning their education, career choice, relationships, and reproductive choices. For those who did not want to know, the most common reason was concern for introducing stress into their family. Just over half of respondents (53 percent) would want to make this decision jointly with their parents, while 19 percent felt they could make the decision on their own.

The authors note that interestingly, adolescents’ disclosure preferences were consistent between boys and girls, across race and ethnicity groups, and across socioeconomic groups. Younger participants, those 12 years of age, reported less frequently wanting to receive non-actionable genetic information (55 percent), compared to students aged 13 to 18 years (87 percent). Future research will evaluate this age-based finding and whether understanding of the test, the choice, and its ramifications, play a role.