In lieu of an abstract, here is a brief excerpt of the content:

References 247 Advisory Committee on Heritable Disorders in Newborns and Children. 2009. Transcript of nineteenth meeting. Department of Health and Human Services, Health Resources and Services Administration. September 25, Bethesda, Md. Albrecht, G. L., and P. J. Devlieger. 1999. “The Disability Paradox: A High Quality of Life against All Odds.” Social Science and Medicine 48:977–988. Alexander, D., and J. Hanson. 2006. “NICHD Research Initiative in Newborn Screening.” Mental Retardation and Developmental Disabilities Research Review 12:301–304. Alexander, D., and P. van Dyck. 2006. “A Vision of the Future of Newborn Screening.” Pediatrics 117:S350–S354. ———. 2007. “Neonatal Screening: Old Dogma or Sound Principle?: In Reply.” Pediatrics 119:407. Alford, R. R. 1998. The Craft of Inquiry: Theories, Methods, Evidence. New York: Oxford University Press. Al-Jader, L. N., M. C. Goodchild, H. C. Ryley, and P. S. Harper. 1990. “Attitudes of Parents of Cystic Fibrosis Children towards Neonatal Screening and Antenatal Diagnosis.” Clinical Genetics 38:460–465. American Academy of Pediatrics [AAP]. 2000. “Serving the Family from Birth to the Medical Home: Newborn Screening; A Blueprint for the Future. A Call for a National Agenda on State Newborn Screening Programs.” Pediatrics 106:389–427. American College of Medical Genetics [ACMG]. 2005. “Newborn Screening: Toward a Uniform Screening Panel and System.” Federal Register 70 (44). Maternal and Child Health Bureau, http://mchb.hrsa.gov/screening/. American College of Medical Genetics/American Society of Human Genetics Test and Technology Transfer Committee Working Group [ACMG/ASHG]. 2000. “Tandem Mass Spectrometry in Newborn Screening.” Genetics 2:267–269. American College of Obstetricians and Gynecologists [ACOG]. 2003. “ACOG Committee Opinion Number 287, October 2003: Newborn Screening.” Obstetrics and Gynecology 102:887–889. ———. 2005. “ACOG Committee Opinion Number 325, December 2005: Update on Carrier Screening for Cystic Fibrosis.” Obstetrics and Gynecology 106:1465–1468. American Society of Human Genetics and American College of Medical Genetics [ASHG/ ACMG]. 1995. “Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.” American Journal of Human Genetics 57:1233–1241. ———. 2005. “Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.” American Journal of Human Genetics 57:1233–1241. Andrews, L. B., J. E. Fullerton, N. A. Hotzman, and A. Motolsky. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, D.C.: National Academy Press. Annas, G. 1982. “Mandatory PKU Screening: The Other Side of the Looking Glass.” American Journal of Public Health 72:137–160. Ariès, P. 1962. Centuries of Childhood: A Social History of Family Life. New York: Knopf. Armstrong, E., D. Carpenter, and M. Hojnacki. 2006. “Whose Deaths Matter? Mortality, Advocacy, and Attention to Disease in the Mass Media.” Journal of Health Politics, Policy, and Law 31:729–772. Arn, P. 2007. “Newborn Screening: Current Status.” Health Affairs 26:559–566. Aronowitz, R. 2009. “The Converged Experience of Risk and Disease.” Milbank Quarterly 87:417–442. Atkinson, K., B. Zuckerman, J. Sharfstein, D. Levin, R. Blatt, and H. Koh. 2001. “A Public Health Response to Emerging Technology: Expansion of the Massachusetts Newborn Screening Program.” Public Health Report 116:122–131. Au, S. 2009. “Equal Access: Providing Genetic Services to Families Living away from Urban Centers.” www.geneticalliance.org/conference09-symposia-services. Baile, W. F., R. Buckman, R. Lenzi, G. Glober, E. A. Beale, and A. P. Kudelka. 2000. “SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer.” Oncologist 5:302–311. Bailey, D. B., Jr. 2004. “Newborn Screening for Fragile X Syndrome.” Mental Retardation and Developmental Disabilities Research Reviews 10:3–10. Bailey, D. B., Jr., L. M. Beskow, A. M. Davis, and D. Skinner. 2006. “Changing Perspectives on the Benefits of Newborn Screening.” Mental Retardation and Developmental Disabilities Research Reviews 12:270–279. Bailey, D. B., D. Skinner, and S. F. Warren. 2005. “Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit.” American Journal of Public Health 95:1889–1893. Baily, M. A., and T. Murray. 2008. “Ethics, Evidence, and Cost in Newborn Screening.” Hastings Center Report 38:23–31. Baughcum, A. E., S. B. Johnson, S. K. Carmichael, A. B. Lewin, J. X. She, and D. A. Schatz. 2005. “Maternal Efforts to Prevent Type 1 Diabetes in At-Risk Children.” Diabetes Care 28:916–921. Bazell, R. 1998. Her 2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer. New York: Random House. Berge, J. M., and J. M. Patterson. 2004. “Cystic Fibrosis and the Family: A Review and Critique of...

Share