Only 33% of California Newborns Receive State-Funded Test for 30 Inherited Metabolic Diseases
Only about 33% of California newborns have received a state-funded test under a pilot research program launched in January to screen newborns for 30 genetic diseases, the Sacramento Bee reports. The state used a $3.9 million federal grant to establish the Newborn Screening Program, which uses technology called tandem mass spectrometry to test for 30 inherited metabolic diseases that can lead to disability or death without early treatment. Since January, the program has detected 14 cases of metabolic disease and 281 false positives in the 118,000 newborns screened statewide. "The ability to identify a child with a potentially life-threatening disease and treat that child so that they will not become ill and suffer serious medical consequences is a tremendously important thing, and it is all the reason you need to be very supportive of this type of screening," Dr. Mark Lipson, head of genetic services at Kaiser Sacramento, said. However, the research program faces a number of "challenges to widespread participation" from hospitals. Many hospitals have decided not to offer the tandem mass spectrometry test over concerns about legal liability and the additional "paperwork for obtaining informed consent for research participation from patients," the Bee reports. Dr. George Cunningham, head of the genetic disease division at the Department of Health Services, said that "there is a lot of nervousness on the part of hospitals to be sure they are complying with federal standards for protection of human subjects. For a lot of hospitals, it's easier not to do research and not expose themselves to extra liability." About 60% of the state's 300 birthing hospitals offer the test to at least half of their newborns, Cunningham said (Ishida, Sacramento Bee, 9/11).This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.