Statement of Support from Newborn Screening, Consumer Advocacy and Public Health Officials:
On April 6-7, 2009, the Regional Genetics and Newborn Screening Collaboratives' National Coordinating Center (NCC) convened a meeting, which was jointly funded by HRSA MCHB/GSB and the Eunice Kennedy Shriver NICHD, to discuss state newborn screening programs with regard to the goals of the Newborn Screening Saves Lives Act (PL 110-204). Meeting attendees included representatives from state NBS programs, state screening laboratories, state legal representatives, academic institutions, consumer advocacy organizations and the relevant large federal agencies as well as clinicians. The following statement was developed and agreed upon regarding the extremely high value of residual blood spots while also balancing public good with research interests and maintaining privacy and confidentiality as a central focus.
"Newborn screening (NBS) is a valuable public health prevention activity that continuously evolves to improve and optimize the health of our children. One product of the multi-faceted NBS process, the residual dried blood spots (DBS), serves as an additional valuable resource, whose benefits were discussed at length. Their overall use includes facilitating the improvement and evolution of newborn screening programs nationwide. It is envisioned that their uses will improve and change as scientific advances occur in the coming years. It is the desire of the group to encourage these developments with the continuation of appropriate stewardship to assure privacy and confidentiality. Meeting attendees agreed that moving forward policy needs to recognize the three classes of residual DBS use.
These include: 1) improvement of current screening programs; 2) introduction of new screening tests; and 3) expanding medical knowledge related to NBS."
|Contact: Kathy Ridgely Beal|
American College of Medical Genetics