Children and Predictive Genomic Testing: Disease Prevention, Research Protection, and Our Future
- Journal of Pediatric Psychology
Author/s: -Tarini, Beth A -Tercyak, Kenneth P -Wilfond, Benjamin S
Journal: Journal of Pediatric Psychology
Genetic testing offered by direct-to-consumer companies—herein referred to as ‘‘predictive genomic testing’’—has come under federal scrutiny. Critics claim testing yields uninterpretable and potentially harmful information. Supporters assert individuals have a right to this information, which could catalyze preventive health actions. Despite contentions that predictive genomic testing is a tool of primary disease prevention, little discussion has focused on its use with children. This partly stems from concerns expressed in existing professional guidelines about the potential for psychological and behavioral harm to children engendered by predictive genetic tests for Mendelian diseases. Conducting research to understand the actual benefits and harms is important for policy development and practice guidance and can be ethically justified within the pediatric regulatory framework of research that offers a prospect of direct benefit. Child health psychologists are well poised to contribute to this research effort, and promote the translation of genomic discoveries to improve pediatric medicine.