Balancing benefits and risks for cystic fibrosis newborn screening: Implications for policy decisions

Journal of Pediatrics

Volumn 147, Issue 3 SUPPL., 2005, Pages

  Wilfond, Benjamin S ^a   Parad, Richard B ^a   Fost, Norman ^a  

^a CFF Data Monitoring Committee ^*

Author keywords

[No Author keywords available]

Indexed keywords

CONFERENCE PAPER; CYSTIC FIBROSIS; DECISION MAKING; DIAGNOSTIC TEST; GENETIC COUNSELING; GENETIC PROCEDURES; GENETIC SCREENING; HEALTH CARE POLICY; HUMAN; INFORMED CONSENT; NEWBORN SCREENING; NUTRITION; PARENTAL CONSENT; PRIORITY JOURNAL; RISK BENEFIT ANALYSIS;

ADAPTATION, PSYCHOLOGICAL; ATTITUDE TO HEALTH; COST-BENEFIT ANALYSIS; CYSTIC FIBROSIS; DECISION MAKING, ORGANIZATIONAL; EVIDENCE-BASED MEDICINE; FALSE POSITIVE REACTIONS; FAMILY; HEALTH CARE RATIONING; HEALTH POLICY; HUMANS; INFANT, NEWBORN; MANDATORY TESTING; NEEDS ASSESSMENT; NEONATAL SCREENING; NUTRITIONAL STATUS; OUTCOME ASSESSMENT (HEALTH CARE); POLICY MAKING; REPRODUCIBILITY OF RESULTS; RISK ASSESSMENT; SENSITIVITY AND SPECIFICITY;

EID: 25844516484     PISSN: 00223476     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.jpeds.2005.08.019     Document Type: Conference Paper

References (42)

1. B. Wilfond, and E.J. Thomson Models of public health genetic policy development M. Khoury W. Burke E. Thomson Genetics and public health in the 21st century: using genetic information to improve health and prevent disease 2000 Oxford University Press New York 61 81
2. M.H. Farrell, and P.M. Farrell Newborn screening for cystic fibrosis: ensuring more good than harm J Pediatr 143 2003 707 712
3. B.S. Wilfond Screening policy for cystic fibrosis: the role of evidence Hastings Cent Rep 25 1995 S21 S23
4. J. Wilson, and F. Jungner Principles and practice of screening for disease 1968 World Health Organization Geneva
5. Centers of Disease Control and Prevention Newborn screening for cystic fibrosis: evaluation of benefits and risks and recommendations for state newborn screening programs MMWR 53 RR-13 2004 1 36
6. P.M. Farrell, M.R. Kosorok, M.J. Rock, A. Laxova, L. Zeng, and H.C. Lai Early diagnosis of cystic fibrosis through neonatal screening prevents severe malnutrition and improves long-term growth. Wisconsin Cystic Fibrosis Neonatal Screening Study Group Pediatrics 107 2001 1 13
7. R.L. Koscik, P.M. Farrell, M.R. Kosorok, K.M. Zaremba, A. Laxova, and H.C. Lai Cognitive function of children with cystic fibrosis: deleterious effect of early malnutrition Pediatrics 113 2004 1549 1558
8. K.M. Hayllar, S.G. Williams, A.E. Wise, S. Pouria, M. Lombard, and M.E. Hodson A prognostic model for the prediction of survival in cystic fibrosis Thorax 52 1997 313 317
9. L.T. Beker, E. Russek-Cohen, and R.J. Fink Stature as a prognostic factor in cystic fibrosis survival J Am Diet Assoc 101 2001 438 442
10. M.W. Konstan, S.M. Butler, M.E. Wohl, M. Stoddard, R. Matousek, and J.S. Wagener Growth and nutritional indexes in early life predict pulmonary function in cystic fibrosis J Pediatr 142 2003 624 630
11. P.M. Farrell, Z. Li, M.R. Kosorok, A. Laxova, C.G. Green, and J. Collins Bronchopulmonary disease in children with cystic fibrosis after early or delayed diagnosis Am J Respir Crit Care Med 168 2003 1100 1108
12. E. Kerem, M. Corey, B. Kerem, J. Rommens, D. Markeiwicz, and H. Levison The relationship between genotype and phenotype in cystic fibrosis: analysis of the most common mutation (ΔF508) N Engl J Med 323 1990 1517 1522
13. P. Kristidis, D. Bozon, M. Corey, D. Markiewicz, J. Rommens, and C. Tsui Genetic determination of exocrine pancreatic function in cystic fibrosis Am J Hum Genet 50 1992 1178 1184
14. N. Ahmed, M. Corey, G. Forstner, J. Zielenski, L.C. Tsui, and L. Ellis Molecular consequences of cystic fibrosis transmembrane regulator (CFTR) gene mutations in the exocrine pancreas Gut 52 2003 1159 1164
15. E.P. Parsons, and D.M. Bradley Psychosocial issues in newborn screening for cystic fibrosis Paediatr Respir Rev 4 2003 285 292
16. A. Tluczek, E.H. Mischler, P.M. Farrell, N. Fost, N.M. Peterson, and P. Carey Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing J Dev Behav Pediatr 13 1992 181 186
17. S.E. Waisbren, S. Albers, S. Amato, M. Ampola, T.G. Brewster, and L. Demmer Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress JAMA 290 2003 2564 2572
18. M.A. Baroni, Y.E. Anderson, and E. Mischler Cystic fibrosis newborn screening: impact of early screening results on parenting stress Pediatr Nurs 23 1997 143 151
19. M.B. Rothenberg, and E.M. Sills Iatrogenesis: the PKU anxiety syndrome J Am Acad Child Psychiatry 7 1968 689 692
20. M. Green, and A.J. Solnit Reactions to the threatened loss of a child: a vulnerable child syndrome Pediatrics 34 1964 58 66
21. L.K. Leslie, and W.T. Boyce Consultation with the specialist. The vulnerable child Pediatr Rev 17 1996 323 326
22. E.H. Mischler, B.S. Wilfond, N. Fost, A. Laxova, C. Reiser, and C.M. Sauer Cystic fibrosis newborn screening: impact on reproductive behavior and implications for genetic counseling Pediatrics 102 1998 44 52
23. E.P. Parsons, A.J. Clarke, and D.M. Bradley Implications of carrier identification in newborn screening for cystic fibrosis Arch Dis Child Fetal Neonatal Ed 88 2003 467 471
24. D.J. Ciske, A. Haavisto, A. Laxova, L.Z. Rock, and P.M. Farrell Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process Pediatrics 107 2001 699 705
25. American Society of Human Genetics Board of Directors and the American College of Medical Genetics Board of Directors ASHG/ACMG Report Points to Consider: Ethical, Legal and Psychosocial Implications of Genetic Testing in Children and Adolescents Am J Hum Genet 57 1995 1233 1241
26. R.M. Nelson, J.R. Botkin, E.D. Kodish, M. Levetown, J.T. Truman, and B.S. Wilfond Ethical issues with genetic testing in pediatrics Pediatrics 107 2001 1451 1455
27. A.M. Comeau, R.B. Parad, H.L. Dorkin, M. Dovey, R. Gerstle, and K. Haver Population-based newborn screening for genetic disorders when multiple mutation DNA testing is incorporated: a cystic fibrosis newborn screening model demonstrating increased sensitivity but more carrier detections Pediatrics 113 2004 1573 1581
28. P.G. Wheeler, R. Smith, H. Dorkin, R.B. Parad, A.M. Comeau, and D.W. Bianchi Genetic counseling after implementation of statewide cystic fibrosis newborn screening: two years' experience in one medical center Genet Med 3 2001 411 415
29. J.P. Dillard, C.L. Carson, C.J. Bernard, A. Laxova, and P.M. Farrell An analysis of communication following newborn screening for cystic fibrosis Health Commun 16 2004 197 205
30. W.W. Grody, G.R. Cutting, K.W. Klinger, C.S. Richards, M.S. Watson, and R.J. Desnick Laboratory standards and guidelines for population-based cystic fibrosis carrier screening Genet Med 3 2001 149 154
31. B. Wilfond, and L.S. Rothenberg Ethical issues in cystic fibrosis newborn screening: from data to public health policy Curr Opin Pulm Med 8 2002 529 534
32. C.L. Freund, E.W. Clayton, and B.S. Wilfond Natural settings trials - improving the introduction of clinical genetic tests J Law Med Ethics 32 2004 106 110
33. Y.M. Yang, S. Andrews, R. Peterson, A. Shah, and M. Cepeda Prenatal sickle cell screening education effect on the follow-up rates of infants with sickle cell trait Patient Educ Couns 39 2000 185 189
34. L.K. Grossman, N.A. Holtzman, E. Charney, and A.D. Schwartz Neonatal screening and genetic counseling for sickle cell trait Am J Dis Child 139 1985 241 244
35. P.S. Bessman, and I.P. Swazey PKU: a study of biomedical legislation 1977 Harvard University Press Cambridge, Mass
36. American Academy of Pediatrics Statement on compulsory testing of newborn infants for hereditary metabolic disorders J Pediatr 39 1967 623
37. National Academy of Sciences Genetic screening: programs, principles, and research 1975 National Academy of Sciences Washington, DC
38. L.B. Andrews J.E. Fullerton N.A. Hotzman A.G. Motolsky Assessing genetic risks: implications for health and social policy 1994 National Academy Press Washington, DC
39. N.A. Holtzman Proceed with caution: predicting genetic risks in the recombinant DNA era 1989 Johns Hopkins University Press Baltimore
40. National Institutes of Health Consensus Development Conference Statement: phenylketonuria: screening and management, October 16-18, 2000 Pediatrics 108 2001 972 982
41. L.F. Ross Predictive genetic testing for conditions that present in childhood Kennedy Inst Ethics J 12 2002 225 244
42. N.A. Holtzman, R. Faden, A.J. Chwalow, and S.D. Horn Effect of informed parental consent on mothers' knowledge of newborn screening Pediatrics 72 1983 807 812