Adolescent Perspectives on Genetic Testing for Huntington’s Disease

In 2015, the American Society of Human Genetics (ASHG) released a position statement which recommended minors to defer genetic testing for adult-onset conditions until adulthood. In the 2016 DNA Day Essay Contest, high school students were asked to research an adult-onset genetic disorder and use it to formulate a stance on whether they agreed or disagreed with the position statement. Phase two of this study focused on the essays written about Huntington’s Disease (HD). Within the HD essays, 57% chose to defer, 35% chose not to defer, and 8% did not clearly state an opinion. Essays were analyzed using a codebook that was established in Phase one and the top codes were further analyzed for themes. The top codes that were thematically analyzed were “Psychological Risks to Minor”, “No Medical Benefit/Not Preventable”, “Necessary to Plan/Prepare”, and “Genetic Testing Variability and Uncertain Predictability.” Although many of the essays agreed to defer testing, many students cited similar reasons, regardless of their stance