A systematic review of the effects of disclosing carrier results generated through newborn screening

Journal of Genetic Counseling

Volumn 17, Issue 6, 2008, Pages 538-549

  Hayeems, R Z ^a   Bytautas, J P ^a   Miller, F A ^a  

^a UNIVERSITY OF TORONTO   (Canada)

Author keywords

Cystic fibrosis; Effects of disclosure; Expanded newborn screening; Genetic counseling; Incidental carrier results; Sickle cell disorders

Indexed keywords

ARTICLE; CYSTIC FIBROSIS; GENETIC ANALYSIS; GENETIC COUNSELING; GENETIC SCREENING; HEALTH CARE PERSONNEL; HETEROZYGOTE DETECTION; HUMAN; MEDICAL DECISION MAKING; NEWBORN SCREENING; REPRODUCTION; REPRODUCTIVE HEALTH; SICKLE CELL ANEMIA;

ANEMIA, SICKLE CELL; CYSTIC FIBROSIS; GENETIC COUNSELING; GENETIC SCREENING; HETEROZYGOTE DETECTION; HUMANS; INFANT, NEWBORN; NEONATAL SCREENING;

EID: 57349153944     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-008-9180-1     Document Type: Article

References (46)

1. American Society for Human Genetics/Advisory Council on Medical Genetics 1995 Points to consider: Ethical, legal and psychosocial implications of genetic testing in children and adolescents American Journal of Human Genetics 57 1233 1241
2. M. A. Baroni Y. E. Anderson E. Mischler 1997 Cystic fibrosis newborn screening: Impact of early screening results on parenting stress Pediatric Nursing 23 2 143 151
3. P. Borry P. Schotsman J. P. Frynes K. Dierickx 2006 Carrier testing in minors: A systematic review of guidelines and positions statements European Journal of Human Genetics 14 2 133 138
4. P. Borry L. Stultiens H. Nys J. J. Cassiman K. Dierickx 2006 Presymptomatic and predictive genetic testing in minors: A systematic review of guidelines and position papers Clinical Genetics 70 374 381
5. D. J. Ciske A. Haavisto A. Laxova L. Z. M. Rock P. M. Farrell 2001 Genetic counseling and neonatal screening for cystic fibrosis: An assessment of the communication process Pediatrics 108 699 705
6. C. B. Cohen 1998 Wrestling with the future: Should we test children for adult-onset genetic conditions? Kennedy Institute of Ethics Journal 8 2 111 130
7. A. M. Comeau R. Parad R. Gerstle B. P. O'Sullivan H. L. Dorkin M. Dovey 2005 Communication systems and their models: Massachusetts Parent Compliance with Recommended Specialty Care after Positive Cystic Fibrosis Newborn Screening Result The Journal of Pediatrics 147 3 S98 S100
8. G. Corbie-Smith S. B. Thomas M. V. Williams S. Moody-Ayers 1999 Attitudes and beliefs of African Americans toward participation in medical research Journal of General Internal Medicine 14 9 537 546
9. L. Curnow R. Savarirayan J. Massie 2003 Genetics counselling after carrier detection by newborn screening when one parent carries ΔF508 and the other R117H Archives of Disease in Childhood 88 10 886 888
10. S.C. Davies E. Cronin M. Gill P. Greengross M. Hickman C. Normand 2000 Screening for sickle cell disease and thalassaemia: A systematic review with supplementary research Health Technology Assessment (Winchester, England) 4 3 99
11. S. W. Day G. E. Brunson W. C. Wang 1997 Successful newborn sickle cell trait counseling program using health department nurses Pediatric Nursing 23 6 557 561
12. M. H. Farrell L. K. Certain P. M. Farrell 2001 Genetic counseling and risk communication services of newborn screening programs Archives of Pediatrics & Adolescent Medicine 155 120 126
13. M. H. Farrell A. La Pean L. Ladouceur 2005 Content of communication by pediatric residents after newborn genetic screening Pediatrics 116 6 1492 1498
14. P. M. Farrell E. H. Mischler 1992 Newborn screening for cystic fibrosis. The Cystic Fibrosis Neonatal Screening Study Group Advances in Pediatrics 39 35 70
15. J. M. Green J. Hewison H. L. Bekker L. D. Bryant H. Cuckle 2004 Psychosocial aspects of genetic screening of pregnant women and newborns: A systematic review Health Technology Assessment (Winchester, England) 8 33 124
16. N. S. Green K. A. Pass 2005 Neonatal screening by DNA microarray: Spots and chips Nature Reviews. Genetics 6 147 151
17. S. D. Grosse C. A. Boyle J. R. Botkin A. M. Comeau M. Kharrazi M. Rosenfeld 2004 Newborn screening for cystic fibrosis: Evaluation of benefits and risks and recommendations for state newborn screening programs Morbidity & Mortality Weekly Report Recommendations & Reports 53 RR-13 1 36
18. L. K. Grossman N. A. Holtzman E. Charney A. D. Schwartz 1985 Neonatal screening and genetic counseling for sickle cell trait American Journal of Diseases of Children (1960) 139 3 241 244
19. R. Grover S. Newman D. Wethers K. Anyane-Yeboa K. Pass 1986 Newborn screening for hemoglobinopathies: The benefit beyond the target American Journal of Public Health 76 10 1236 1237
20. A. R. Kemper R. L. Uren K. L. Moseley S. J. Clark K. Pass 2006 Primary care physicians' attitudes regarding follow-up care for children with positive newborn screening results Pediatrics 118 5 1836 1841
21. B. Kladny E. A. Gettig L. Krishnamurti 2005 Systematic follow-up and case management of the abnormal newborn screen can improve acceptance of genetic counseling for sickle cell or other hemoglobinopathy trait Genetics in Medicine 7 2 139 142
22. A. La Pean M. H. Farrell 2005 Initially misleading communication of carrier results after newborn screening Pediatrics 116 6 1499 1505
23. E. Lagoe S. Labella G. Arnold P. T. Rowley 2005 Cystic fibrosis newborn screening: A pilot study to maximize carrier screening Genetic Testing 9 3 255 260
24. L. Laird C. Dezateux E. N. Anionwu 1996 Neonatal screening for sickle cell disorders: What about the carrier infants? BMJ (Clinical Research Ed.) 313 7054 407 411
25. S. Lewis L. Curnow M. Ross J. Massie 2006 Parental attitudes to the identification of their infants as carriers of cystic fibrosis by newborn screening Journal of Paediatrics and Child Health 42 9 533 537
26. E. H. Mischler B. S. Wilfond N. Fost A. Laxova C. Reiser C. M. Sauer 1998 Cystic fibrosis newborn screening: Impact on reproductive behavior and implications for genetic counseling Pediatrics 102 44 52
27. Murray, J., Cuckle, H., Taylor, G., Littlewood, J., & Hewison, J. (1999). Screening for cystic fibrosis. Health technology assessment (Winchester, England), 3(8).
28. R. M. Nelson J. R. Botkin E. D. Kodish M. Levetown J. T. Truman B. S. Wilfond 2001 American Academy of Pediatrics, Committee on Bioethics, ethical issues with genetic testing in pediatrics Pediatrics 107 6 1451 1455
29. NIH Consensus Development Panel 1987 Newborn screening for sickle cell disease and other hemaglobinopathies Journal of the American Medical Association 258 9 1205 1209
30. S. Oliver C. Dezateux J. Kavanagh T. Lempert R. Stewart 2004 Disclosing to parents newborn carrier status identified by routine blood spot screening Cochrane Database of Systematic Reviews (Online: Update Software) 4 003859
31. Oliver, S., Lempert, T., Stewart, R., Kavanaugh, J., & Dezateux, C.(2004b). Disclosing to parents newborn carrier status following routine blood spot screening. London: EPPI-Centre, Social Science Research Unit, Institute of Education, University of London.
32. E. P. Parsons A. J. Clarke D. M. Bradley 2003 Implications of carrier identification in newborn screening for cystic fibrosis Archives of Disease in Childhood. Fetal and Neonatal Edition 88 6 F467 F471
33. M. K. Pelias 2006 Genetic-testing of children for adult-onset diseases: Is testing in the child's best interests? The Mount Sinai Journal of Medicine, New York 73 3 605 608
34. M. Z. Pelias 1991 Duty to disclose in medical genetics: A legal perspective American Journal of Medical Genetics 39 347 354
35. E. Ranieri B. D. Lewis R. L. Gerace R. G. Ryall C. P. Morris P. V. Nelson 1994 Neonatal screening for cystic fibrosis using immunoreactive trypsin and direct gene analysis: Four years experience BMJ (Clinical Research Ed.) 308 1469 1472
36. L. F. Ross 2002 Predictive testing for conditions that present in childhood Kennedy Institute of Ethics Journal 12 3 225 244
37. P. T. Rowley 1989 Parental receptivity to neonatal sickle trait identification Pediatrics 83 5 891 893
38. V. Scotet M. De Braekeleer M. P. Audrézet L. Lodé C. Verlingue I. Quéré 2001 Prevalence of CFTR mutations in hypertrypsinaemia detected through neonatal screening for cystic fibrosis Clinical Genetics 59 1 42 47
39. A. Tluczek R. L. Koscik P. M. Farrell M. J. Rock 2005 Psychosocial risk associated with newborn screening for cystic fibrosis: Parents' experience while awaiting the sweat-test appointment Pediatrics 115 6 1692 1703
40. A. Tluczek R. L. Koscik P. Modaff D. Pfeil M. J. Rock P. M. Farrell 2006 Newborn screening for cystic fibrosis: Parents' preferences regarding counseling at the time of infants' sweat test Journal of Genetic Counseling 15 4 277 291
41. UK Newborn Screening Program Centre (2005). Newborn blood spot screening in the UK: Policies and standards.
42. Wailoo, K. (2001). Dying in the city of the blues: Sickle cell anemia and the politics of race and health. University of North Carolina Press.
43. P. G. Wheeler R. Smith H. Dorkin R. B. Parad A. M. Comeau D. W. Bianchi 2001 Genetic counseling after implementation of statewide cystic fibrosis newborn screening: Two years' experience in one medical center Genetics in Medicine 3 6 411 415
44. B. S. Wilfond S. E. Gollust 2005 Policy issues for expanding newborn screening programs: The cystic fibrosis newborn screening experience in the United States The Journal of Pediatrics 146 5 668 674
45. Y. M. Yang S. Andrews R. Peterson A. Shah M. Capeda 2000 Prenatal sickle cell screening education effect on the follow-up rates of infants with sickle cell trait Patient Education and Counseling 39 2-3 185 189
46. D. Zeuner A. E. Ades J. Karnon J. Brown C. Dezateux E. N. Anionwu 1999 Antenatal and neonatal haemoglobinopathy screening in the UK: Review and economic analysis Health Technology Assessment (Winchester, England) 3 11 186