Grant: Travel Awards - Institute Community Support

Next Generation Sequencing (NGS) allows a patient's entire genome to be decoded to identify genetic variants associated with disease, risk of disease, and drug metabolism deficiencies. Hundreds of genetic variants have been discovered, making this a powerful resource for screening, diagnosis, and treatment selection. This costly technology, consisting of whole exome or whole genome sequencing, requires substantial investment in laboratory and technical resources, and skills in bioinformatics and clinical genetics. By emphasizing early detection, NGS in newborns and children can improve health over the life course. However, the use of NGS in children raises questions regarding the acceptability of testing minors for adult onset disease/risk, informed consent, balancing benefits and harms, and the impact of this volume of knowledge on strained health system resources. This expert panel will address social, legal, ethical, public policy and economic issues pertaining to NGS in children for patients, families, the health care system and society.