Josephine Johnston, LLB, MBHL, Director of Research and Research Scholar, The Hastings Center
Affordable genome sequencing has led some to suggest that all newborns be sequenced at birth, setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child’s genome. As part of the NSIGHT studies, funded by NIH, this suggestion was scrutinized by an Ethics and Policy Advisory Board, which recommended against population-wide whole genome or whole exome sequencing. Instead, we recommend a more nuanced approach, that tailors sequencing to the needs of children, families, and society in various care contexts, from public health screening programs to pediatric care to NICUs.
Seminar on Ethical, Legal and Social Implications of Genetics
Rm. 405A and B, Irving Institute for Clinical and Translational Research, 10th Floor, Presbyterian Hospital (PH) Building, 622 W. 168th Street, NYC