Newborn Dried Blood Spot Screening: Residual Specimen Storage Issues Traditional newborn dried blood spot screening (NDBS) has expanded in recent years to include upwards of 50 different conditions in many states. Once the screening tests are complete, the residual blood specimens (RBSs) that remain are most often available for quality assurance and public health research. The articles by Botkin et al 1 and Bombard et al 2 contained in this issue of Pediatrics investigate the attitudes of parents in both the United States (n 5 3855) and Canada (n 5 66) toward program policies that allow for the possible storage and secondary use of RBSs. Figure 1 illustrates the variability in the United States regarding the length of time RBSs are currently stored. Currently, 14 programs save RBSs for $21 years, and these programs serve ∼45% of all US births. Although the need for RBSs for laboratory quality assurance, which may include long-term needs, is generally understood (and accepted), the way in which programs disclose (or fail to disclose) information about these uses and the manner by which parents may choose to opt in or out of RBS storage and/or potential research uses are the subject of much discussion and controversy. The Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children has recently rec- ommended extensive educational efforts for parents and health care professional alike regarding the possibility of secondary uses of residual NDBS specimens. 3 Although these recommendations focus primarily on improved education and transparent policies, they also suggest the possibility of a national RBS repository to which parents could direct their newborn’ s RBS. A virtual blood spot repository available to researchers and a data repository in which clinicians could deposit long-term follow-up data are already in development. 4 It is important that primary care physicians educate themselves as to their role in the NDBS system, whether in the United States or Canada or elsewhere. The value of NDBS for improving health outcomes in newborns and related benefits to families and society are well established and accepted. Because blood is taken from essentially all newborns for NDBS in both the United States and Canada, the potential uses of this population-based pool of specimens for research and program evaluation make it almost priceless. The questions that arise relate primarily to ethics and legalities regarding specimen collection and RBS use. Because most US and Canadian NDBS systems do not adequately address education of the public (including parents), health care professionals, and policy makers on secondary specimen use, the RBS questions and controversies persist, often to the detriment of possible improvements in the public’ s health through research. It is essential that primary care physicians, specialists, researchers, public health professionals, and the public are made aware of, and understand, the value of NDBS and the related research opportunities AUTHORS: Bradford L. Therrell, Jr, MS, PhD, and W. Harry Hannon, PhD National Newborn Screening and Genetics Resource Center, Austin, Texas Opinions expressed in these commentaries are those of the author and not necessarily those of the American Academy of Pediatrics or its Committees. www.pediatrics.org/cgi/doi/10.1542/peds.2011-3416 doi:10.1542/peds.2011-3416 Accepted for publication Nov 21, 2011 Address correspondence to Bradford L. Therrell, Jr, MS, PhD, National Newborn Screening and Genetics Resource Center, 1912 W. Anderson Lane #210, Austin, TX 78757. E-mail: therrell@uthscsa.edu PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2012 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: Dr Hannon has provided consulting services for newborn screening to the Centers for Disease Control and Prevention, National Newborn Screening and Genetics Resource Center, and PerkinElmer Inc upon request; Dr Therrell has indicated he has no financial relationships relevant to this article to disclose. COMPANION PAPERS: Companions to this article can be found on pages 231 and 239 and online at www.pediatrics.org/doi/10. 1542/peds.2011-0970 and www.pediatrics.org/doi/10.1542/peds. 2011-2572. PEDIATRICS Volume 129, Number 2, February 2012 365 COMMENTARY at BRISCOE LIBRARY on October 23, 2015 pediatrics.aappublications.org Downloaded from