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
By Tristan Manalac, BioSpace | 04.02.2024
Verve Therapeutics has suspended enrollment in the Phase Ib Heart-1 study evaluating its lead gene editing program VERVE-101 following a serious adverse event, the company announced Tuesday.
A patient, who received a 0.45-mg/kg dose of VERVE-101, developed a grade 3...
By Timnit Gebru and Émile P. Torres, First Monday | 04.14.2024
The stated goal of many organizations in the field of artificial intelligence (AI) is to develop artificial general intelligence (AGI), an imagined system with more intelligence than anything we have ever seen. Without seriously questioning whether such a system can...
By Harold Brubaker, The Philadelphia Inquirer | 04.04.2024
Acompany started by University of Pennsylvania scientist Jim Wilson has received FDA approval to test a form of gene editing in infants for the first time in the United States, the company said Thursday.
The Plymouth Meeting company, iECURE, is...
By Judith Levine, The Intercept | 04.04.2024
WHEN THE ALABAMA Supreme Court ruled that fertilized embryos were “extrauterine children,” it did more than imperil the future of in vitro fertilization in Alabama and, potentially, the U.S. The ruling, on the claimed “wrongful death” of frozen embryos...