Widespread Newborn DNA Sequencing Will Worsen Risks to Genetic Privacy
By Crystal Grant,
ACLU
| 04. 19. 2023
Newborn screening programs are a vital public health measure implemented in the U.S. and across the world, with about one third of babies born globally undergoing some screening. As part of this program in the U.S., nearly every baby born has blood drawn soon after birth, and that blood is tested for a panel of potentially life-threatening inherited disorders. Current newborn screening programs have been invaluable, both in lowering medical costs through early detection and intervention and in decreasing the toll of human suffering that comes from a late diagnosis. Unfortunately, innovation in this field is rapidly outpacing the law, leaving families vulnerable to privacy invasions.
In October 2022, a global consortium of scientists and other newborn DNA sequencing researchers convened to discuss a bold possibility for future care: Every baby born in the U.S. could have their full genome sequenced as an addition to existing newborn screening programs. This means that doctors would have on record all of the baby’s DNA, in addition to drawing their blood and testing for specific, known inherited disorders that can cause serious health...
Related Articles
The Center for Genetics and Society is delighted to recommend the current edition of GMWatch Review – Number 589. UK-based GMWatch, a long-standing ally, was founded in 1998 by Jonathan Matthews as an independent organization seeking to counter the enormous corporate political power and propaganda of the GMO industry and its supporters. Matthews and Claire Robinson are its directors and managing editors.
CGS works to ensure that social justice, equity, human rights, and democratic governance are front...
By Ryan Cross, Endpoints News | 08.19.2025
Human eggs are incredibly rare cells. The ovary typically produces only 400 mature eggs across a woman’s life. But biologists in George Church’s lab at Harvard University — a group that’s never content with nature’s limits — just got a...
By Katherine Drabiak, Journal of Medical Ethics Forum | 08.07.2025
Adapted from Mitochondrial DNA at
National Human Genome Research Institute
Recently, media outlets around the world have been reporting on children born from pronuclear genome transfer (sometimes called “3-parent IVF,” “mitochondrial donation” or “mitochondrial replacement therapy”) at Newcastle Fertility Center...
By Nicky Hudson, The Conversation | 08.12.2025