Adolescent Perspectives on Genetic Testing for Adult Onset Conditions

The American Society of Human Genetics (ASHG) recommends that testing for adult onset conditions be deferred until adulthood because of the potential for psychological harm combined with lack of medical utility. ASHG’s 2016 DNA Day Essay Contest asked 9- 12th graders to defend or refute this position. 1241 essays were submitted. 572 students defended ASHG’s position statement, while 554 argued against. Essays that addressed Alzheimer’s disease (AD) and BRCA-related Hereditary Breast and Ovarian Cancer syndrome were qualitatively analyzed for themes related to the argued position. 64.4% of students argued for deferred testing of AD, and 46.1% of students argued for deferred testing of BRCA. Relevant themes include the availability or lack of medical intervention, potential psychological benefit or consequence, and genetic testing variability and uncertain predictability. This data suggests that minors have thoughtful and insightful opinions that should be taken into consideration when considering predictive genetic testing. KEYWORDS: Predictive testing, presymptomatic testing, minors, adolescents, adult onset, ASHG, ethics, perspectives, attitudes, genetic testing.