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 Fyodor Urnov, Time | 08.12.2024
After a lifetime in the field of epigenetics, and nearly 20 years after my colleagues and I coined the term “genome editing,” I will be the first to admit that describing the “epigenome”—a marvelous biological process that guides...
By Azeen Ghorayshi and Sarah Kliff, The New York Times | 08.12.2024
An emerging movement against in vitro fertilization is driving some doctors and patients in red states to move or destroy frozen embryos.
The embryo migration is most striking in Alabama, where the State Supreme Court ruled in February that embryos...
By Gemma Conroy, Nature | 06.27.2024
Image by Robina Weermeijer from Unsplash
A molecular-editing tool that’s small enough to be delivered to the brain shuts down the production of proteins that cause prion diseases, a rare but deadly group of neurodegenerative disorders.
The system — known...
By Staff, AP-NORC | 07.12.2024
Image by Dr. Jayesh Amin from Wikimedia Commons licensed under CC by-SA 3.0
Most adults support protecting access to in vitro fertilization, or IVF, a type of fertility treatment where eggs are combined with sperm outside the body in a...