1. Consumers refers to the definition in the Newborn Screening American Health Information Community Detailed Use Case: “Members of the public that include patients as well as caregivers, patient advocates, surrogates, family members, emergency contacts, and other parties who may be acting for, or in support of, a patient receiving or potentially receiving healthcare services.” American Health Information Community, Newborn Screening: AHIC Detailed Use Case. Washington, DC, U.S. Department of Health and Human Services, Office of the National Coordinator for Health Information Technology, 2008.
2. Federal Register, 2010. Available at: http://www.federalregister.gov/articles/2010/04/26/2010-9625/secretarys-advisory-committee-on-heritable-disorders-in-newborns-and-children. Accessed January 25, 2011.
3. Institute of Medicine, 2010. Available at: http://iom.edu/Activities/Research/GenomicBasedResearch/2010-MAY-24.aspx. Accessed January 25, 2011.
4. SACHDNC, 2010. Available at: http://www.hrsa.gov/heritabledisorderscommittee/correspondence/HowellLettertoSebeliusOct132010.pdf. Accessed January 25, 2011.
5. Clinical and Laboratory Standards Institute (CLSI) Blood collection on filter paper for newborn screening programs; approved standard—fifth edition. CLSI document LA4-A5. Wayne, PA, Clinical and Laboratory Standards Institute, 2007.