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As the cost of genome sequencing decreases, researchers and clinicians are debating whether all newborns should be sequenced at birth, facilitating a lifetime of personalized medical care. But while sequencing the genomes of some infants may be appropriate in specific contexts, genome-wide sequencing of all newborns should not be pursued at this time, and health professionals should recommend against parents using direct-to-consumer genetic sequencing to diagnose or screen their newborns, states the lead article in The Ethics of Sequencing Newborns: Recommendations and Reflections, a new special report of the Hastings Center Report.
Barbara Koenig, PhD, RN, co-editor on the report. Josephine Johnston, JD, MS, director of research at The Hastings Center; Erik Parens, PhD, senior research scholar at The Hastings Center; and Barbara Koenig, PhD, RN, a professor at University of California, San Francisco, director of the UCSF Program in Bioethics, and a Hastings Center Fellow, are co-editors of the special report.
The lead article was written by members of the UCSF Newborn Sequencing in Genomic Medicine and Public Health (NSIGHT) Ethics and Policy Advisory Board, composed of researchers and scholars from genomics, clinical medicine, bioethics, and other fields. Their recommendations grew out of a four-year interdisciplinary investigation funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development and the National Human Genome Research Institute, two components of the National Institutes of Health, to examine the ethical and policy issues posed by conducting genome sequencing on newborns.
“Genomics is a powerful tool, but the results it returns are still not fully understood and have not been proven to advance health outside of very specific clinical situations,” says Johnston. “The recommendations embrace the use of genomics to aid in the diagnosis of sick newborns, but they draw a sharp distinction between that kind of focused clinical use and population screening.”
Specific recommendations from the new report: