Experts advise against universal genomic screening of newborns

A new report from the Hastings Center has advised against the genomic sequencing of all newborns, a venture that researchers and clinicians have been debating since the cost of sequencing began to decrease.

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Although genomic sequencing could potentially facilitate a lifetime of individualized care, the editors of this new report advise that the sequencing of all newborns should not be pursued and that parents should not use the sequencing to screen their babies.

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."

Josephine Johnston, The Hastings Center

The report advises that targeted or genomic sequencing be used in the clinic to aid the diagnosis of a newborn who is displaying symptoms, as this approach could end the search for a diagnosis.

However, applying genome-wide sequencing of newborns as a public health screening tool could generate results of unknown significance that clinicians do not know how to manage.

Such genetic data could cause unnecessary distress and result in health resources being used for unneeded monitoring.

The cost of implementing universal sequencing would also stretch the operating expenses of state-funded newborn screening programs, undermining the effectiveness of their operations, says the report.

The article was written by members of the University of California San Francisco Newborn Sequencing in Genomic Medicine and Public Health Ethics and Policy Advisory Board, which is made up of scholars and researchers in a number of fields including genomics, bioethics and clinical medicine.

The recommendations are the result of a four-year interdisciplinary investigation funded by the National Institutes of Health to explore the ethical and policy issues surrounding the possibility of performing genomic sequencing on newborns.

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."

Josephine Johnston, The Hastings Center

The report is called “Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies” and is the lead article in “The Ethics of Sequencing Newborns: Recommendations and Reflections,” a special report from the Hastings Center.

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