Changing perspectives on the benefits of newborn screening

Mental Retardation and Developmental Disabilities Research Reviews

Volumn 12, Issue 4, 2006, Pages 270-279

  Bailey Jr , Donald B ^a   Beskow, Laura M ^b   Davis, Arlene M ^c   Skinner, Debra ^d  

^a RTI INTERNATIONAL   (United States)

^b DUKE UNIVERSITY   (United States)

^c UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

^d UNIVERSITY OF NORTH CAROLINA   (United States)

Author keywords

Consumer advocacy; Early intervention; Family; Infant; Newborn; Newborn screening

Indexed keywords

CONSUMER ADVOCACY; EARLY INTERVENTION; FAMILY; HEALTH CARE POLICY; HISTORY OF MEDICINE; HUMAN; MEDICAL DECISION MAKING; MEDICAL SOCIETY; NEWBORN; NEWBORN SCREENING; PRIORITY JOURNAL; PUBLIC OPINION; REVIEW; SCORING SYSTEM; SOCIAL ASPECT; SOCIETY;

GENETIC SCREENING; HUMANS; INFANT, NEWBORN; NEONATAL SCREENING; PREDICTIVE VALUE OF TESTS; PROFESSIONAL COMPETENCE; REFERENCE STANDARDS; RISK ASSESSMENT; UNITED STATES;

EID: 33846003153     PISSN: 10804013     EISSN: 10982779     Source Type: Journal    
DOI: 10.1002/mrdd.20119     Document Type: Review

References (33)

1. American Academy of Pediatrics Newborn Screening Task Force. 2000. Serving the family from birth to the medical home. Newborn screening: A blueprint for the future. Pediatrics 106 (Suppl):389-427.
2. American College of Medical Genetics (ACMG). 2005. Newborn screening: Toward a uniform screening panel and system. Available at http://mchb.hrsa.gov/ screening.
3. American Society of Human Genetics/American College of Medical Genetics (ASHG/ACMG). 1995. Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet 57:1233-1241.
4. Anderson LM, Shinn C, Fullilove MT, et al. 2003. The effectiveness of early childhood development programs: a systematic review. Am J Prev Med 24 (3 Suppl):32-46.
5. Andrews LB, FullartonJE, Holtzman MA, et al., editors. 1994. Assessing genetic risks: implications for health and social policy. Washington, DC: National Institute of Sciences.
6. Atkins D, Siegel J, Slutsky J. 2005. Making policy when the evidence is in dispute. Health Aff 24:102-113.
7. Bailey DB. 2004. Newborn screening for fragile X syndrome. Ment Retard Dev Disabil Res Rev 10:3-10.
8. Bailey DB, Skinner D, Sparkman K. 2003. Discovering fragile X syndrome: family experiences and perceptions. Pediatrics 111:407-416.
9. Bailey DB, Skinner D, Warren SF. 2005. Newborn screening for developmental disabilities: reframing presumptive benefit. Am J Public Health 95:1889-1893.
10. Botkin JR. 2005. Research for newborn screening: developing a national framework. Pediatrics 116:862-871.
11. Botkin JR, Clayton EW, Fost NC, et al. 2006. Newborn screening technology: proceed with caution. Pediatrics 117:1793-1799.
12. Collins FS, Green ED, Guttmacher AE, et al. 2003. A vision for the future of genomics research: a blueprint for the genomics era. Nature 422: 1-13.
13. Committee for the Study of Inborn Errors of Metabolism. 1975. Generic screening programs, principles, and research. Washington, DC: National Academy of Sciences.
14. Gorey KM. 2001. Early childhood education: a meta-analytic affirmation of the short- and long-term benefits of educational opportunity. Sch Psychol Q 16:9-30.
15. Grosse SD, Boyle CA, Kenneson A, et al. 2006. From public health emergency to public health services: the implications of evolving criteria for newborn screening panels. Pediatrics 117:923-929.
16. Guralnick M. 1998. Effectiveness of early intervention for vulnerable children: a developmental perspective. Am J Ment Retard 102: 319-345.
17. Haddow JE, Palomaki GE. 2004. ACCE: a model process for evaluating data on emerging genetic tests. In: Khoury MJ, Little J, Burke W, editors. Human genome epidemiology: a scientific foundation for using genetic information to improve health and prevent disease. Oxford: Oxford University Press. pp 217-233.
18. Holtzman NA, Watson MS. 1997. Promoting safe and effective genetic testing in the United States: final report of the Task Force on Genetic Testing. Bethesda, MD: National Institutes of Health.
19. Kerruish NJ, Robertson SP. 2005. Newborn screening: new developments, new dilemmas. J Med Ethics 31:393-398.
20. Khoury MJ, Jones K, Grosse SD. 2006. Quantifying the health benefits of genetic tests: the importance of a population perspective. Genet Med 8:191-195.
21. Khoury MJ, McCabe LL, McCabe ERB. 2003. Population screening in the age of genomic medicine. N Engl J Med 348:50-58.
22. Massa G, Verlinde F, De Schepper J, et al. 2005. Trends in age at diagnosis of Turner syndrome. Arch Dis Child 90:267-268.
23. National Newborn Screening Information System. 2006. Disorders included in newborn screening program. Available at http://www2. uthscsa.edu/nnsis/.
24. Natowicz M. 2005. Newborn screening-Setting evidenced-based policy for protection. N Eng J Med 353:867-870.
25. Ramey CT, Ramey SL. 1998. Early intervention and early experience. Am Psychol 53:109-120.
26. Ridel KR, Leslie ND, Gilbert DL. 2005. An updated review of the long-term neurological effects of galactosemia. Pediatr Neurol 33:153-161.
27. Sanderson S, Zimmern R, Kroese M, et al. 2005. How can the evaluation of genetic tests be enhanced? Lessons learned from the ACCE framework and evaluating genetic tests in the United Kingdom. Genet Med 7:495-500.
28. Singer E, Coming A, Lamias M. 1998. The polls-trends: genetic testing, engineering, and therapy: awareness and attitudes. Public Opin Q 62:1-20.
29. Skinner D, Sparkman KL, Bailey DB. 2003. Screening for fragile X syndrome: parent attitudes and perspectives. Genet Med 5:378-384.
30. Taylor HA, Wilfond BS. 2004. Ethical issues in newborn screening research: lessons from the Wisconsin cystic fibrosis trial. J Pediatr 145: 292-296.
31. Therrell BL. 2001. U.S. newborn screening policy dilemmas for the twenty-first century. Mol Genet Metab 74:64-74.
32. Wertz DC. 1998. Ethical issues in pediatric genetics: views of geneticists, parents and primary care physicians. Health Law J 6:3-42.
33. Wilson JMG, Junger F. 1968. Principles and practice of screening for disease, Public Health Papers No. 34. Geneva: WHO.