NORD Report Says Policy Changes Needed to Keep Trust in Newborn Screening

Rare Daily Staff

The National Organization for Rare Disorders said policy changes regarding the retention and use of newborn screening residual dried blood spots are needed to protect public trust in the system.

NORD made the comments in a new report, Preserving Public Trust in U.S. Newborn Screening System, on the role that leftover newborn screening samples play in public health and rare disease research.

The organization said residual dried blood spots play a critical role in ensuring the effective functioning of state and territorial newborn screening programs, as well as advancing rare disease and public health research. Nevertheless, recent legal challenges, law enforcement actions and misinformation are threatening the ability of states to use these samples.

NORD has drafted a set of policy principles and recommendations outlining steps policymakers can take to strengthen public trust and ensure continued participation in newborn screening.

“Newborn screening saves the lives of thousands of children in the United States every year,” said Heidi Ross, vice president of policy and regulatory affairs for NORD. “Any policy changes must preserve public trust and embrace transparency so as not to jeopardize these critical health programs.”

To address current challenges to newborn screening programs’ retention and secondary use of residual dried blood spots, NORD said states should bar law enforcement access to residual dried blood spots and newborn screening data. States should also increase transparency and clearly define the ways in which residual dried blood spots may be used in research.

The organization also called on Congress to reauthorize and provide appropriations for federal newborn screening programs as well as provide funding for a national survey of attitudes toward newborn screening programs in order to better understand public perception.

Finally, the organization said newborn screening programs and health systems should initiate or expand public awareness campaigns and include information emphasizing the public health importance of residual dried blood spot retention and usage.

“Trust is a fundamental component of any public health program; newborn screening is no exception,” the report said. “With health misinformation on the rise and negative media coverage often omitting details about the original purpose of dried blood spot collection, newborn screening programs must address the public’s concerns and take proactive steps to build trust through policy change, transparency, and effective communication.”