21. September 2012 00:23
Before they are even a week old, ninety-eight percent of the 4.3 million babies born annually in the United States have a small sample of blood taken from their heels. These newborn bloodspots (NBS) are then screened by state agencies for a variety of inherited conditions and may later be stored in state-operated databases with access permitted to researchers. While the benefits of newborn testing are undeniable, there are also troubling consent and privacy issues raised by the screening, storage, and use of the samples; particularly as screening has moved beyond well-understood, treatable conditions.
September is Newborn Screening Awareness Month. Newborn screening is one of the few forms of genetic testing to which almost everyone is exposed. Yet parental knowledge of newborn screening is almost non-existent. Indeed many parents are unaware that their children have even undergone such testing, let alone that their child’s DNA has been collected and stored by the state.
Newborn Screening in America: Problems and Policies, a new report from the Council for Responsible Genetics, is a comprehensive look at the practice of newborn screening in America today, from its history to its benefits-- both real and exaggerated--to the serious lack of consent from and education for parents.
With state-by-state coverage of practices and procedures, this new report reveals the need for public discussion and debate about the practices surrounding newborn screening, storage, and use.
The report can be accessed at the following url: