Newborn screening (NBS) has long offered the possibility of identifying rare conditions, which can be lethal or debilitating if not detected and treated quickly in the newborn period. These screening programs, usually mandatory, have been well established in every state since the 1960s. In the last decade, the number of conditions screened for has risen exponentially to include more than fifty inborn errors of metabolism, blood disorders, genetic, or other conditions. Not surprisingly, newborn screening programs have been widely accepted for their potential to save the lives of countless children. Despite their valuable public health benefits, however, old approaches to, and more recent expansions of, NBS raise important privacy and policy concerns. NBS samples are collected in most states without affirmative, or sometimes any, consent from parents. NBS programs now screen for an ever-broadening range of diseases—sometimes without careful assessment of the risks and benefits—including conditions for which there is no treatment. NBS samples are retained for long periods or indefinitely. And finally, few, if any, limits prevent potentially invasive uses of these samples by the government or third parties. Indeed, evidence suggests that a great deal of research is being conducted on these stored blood spots, the collection and storage of which many parents are simply unaware. Only a few lawsuits and legislatures have addressed the legality of these practices. With recent expansions in the scope of NBS and increased interest in these samples for research, it is time to take a fresh look at this long-standing public-health system and to reexamine some of the underlying philosophies and practices associated with it. While NBS offers important public health benefits, it also threatens some of the civil liberties of the parents and children involved. This piece argues for the need to strike a careful balance between the public goods and private interests, and describes a methodology that allows these competing values to be recognized in policymaking. It concludes by suggesting ways to balance the important values of maximizing the well-being of newborns and promoting research, while also protecting autonomy and privacy as much as possible.
Did You Give the Government Your Baby’s DNA? Rethinking Consent in Newborn Screening.
Minnesota Journal of Law, Science and Technology.
Retrieved from the University of Minnesota Digital Conservancy,
Content distributed via the University of Minnesota's Digital Conservancy may be subject to additional license and use restrictions applied by the depositor.