Parents' experiences of newborn screening for genetic susceptibility to type 1 diabetes

Journal of Medical Ethics

Volumn 37, Issue 6, 2011, Pages 348-353

  Kerruish, Nikki J ^a  

^a UNIVERSITY OF OTAGO   (New Zealand)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; FEMALE; GENETIC PREDISPOSITION; GENETIC SCREENING; GENETICS; HUMAN; INSULIN DEPENDENT DIABETES MELLITUS; MALE; METHODOLOGY; MIDDLE AGED; NEWBORN; NEWBORN SCREENING; PARENT; PREGNANCY; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; RISK ASSESSMENT;

ADULT; CHILD, PRESCHOOL; DIABETES MELLITUS, TYPE 1; FEMALE; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HUMANS; INFANT, NEWBORN; MALE; MIDDLE AGED; NEONATAL SCREENING; PARENTS; PREGNANCY; RISK ASSESSMENT;

EID: 79958822050     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/jme.2010.039206     Document Type: Article

References (36)

1. Anon. Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors. Am J Hum Genet 1995;57:1233-41.
2. Human Genetics Society of Australasia. Position statement: Presymptomatic and predictive genetic testing in children and young people. 2008. http://www.hgsa.org.au/2009/12/pre-symptomatic-and-predictive-testing-in-children-and-young-people/(accessed 15 Sep 2009).
3. Borry P, Evers-Kiebooms G, Cornel MC, et al. Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations. Eur J Hum Genet 2009;17:711-19.
4. Beucher JDJ, Leray E, Deneuville E, et al. Psychological effects of false-positive results in cystic fibrosis newborn screening: a two-year follow-up. J Pediatr 2010;156:771e6, 776. -1.
5. Green J, Hewison J, Bekker H, et al. Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess 2004;8:1-109.
6. Tarini BA. The current revolution in newborn screening: new technology, old controversies. Arch Pediatr Adolesc Med 2007;161:767-72.
7. Borry P, Stultiens L, Nys H, et al. Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers. Clin Genet 2006;70:374-81.
8. Cameron LD, Muller C. Psychosocial aspects of genetic testing. Curr Opin Psychiatry 2009;22:218-23.
9. Tarini BA, Singer D, Clark SJ, et al. Parents' Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment. Pediatrics 2009;124: 432-8.
10. Malpas PJ. Predictive genetic testing of children for adult-onset diseases and psychological harm. J Med Ethics 2008;34:275-8.
11. Green NS, Pass KA. Neonatal screening by DNA microarray: spots and chips. Nat Rev Genet 2005;6:147.
12. Kerruish NJ, Robertson SP. Newborn screening: new developments, new dilemmas. J Med Ethics 2005;31:393-8.
13. Ross LF. Against newborn screening for type 1 diabetes. Arch Pediatr Adolesc Med 2007;161:616-17; author reply 617-18.
14. Barker JM, Goehrig SH, Barriga K, et al. Clinical characteristics of children diagnosed with type 1 diabetes through intensive screening and follow-up. Diabetes Care 2004;27:1399-404.
15. Devendra D, Liu E, Eisenbarth GS. Type 1 diabetes: recent developments. BMJ 2004;328:750-4.
16. McBride CM, Guttmacher AE. Commentary: trailblazing a research agenda at the interface of pediatrics and genomic discoveryea commentary on the psychological aspects of genomics and child Health. J Pediatr Psychol 2009;34:662-4.
17. Anon. The environmental determinants of diabetes in the young (TEDDY) study. Ann N Y Acad Sci 2008;1150:1-13.
18. Kimpimaki T, Kupila A, Hamalainen AM, et al. The first signs of B-cell autoimmunity appear in infancy in genetically susceptible children from the general population: The Finnish Type 1 Diabetes Prediction and Prevention Study. J Clin Endocrinol Metab 2001;86:4782-8.
19. Bluestone JA, Herold K, Eisenbarth G. Genetics, pathogenesis and clinical interventions in type 1 diabetes. Nature 464:1293-300.
20. Bennett Johnson S, Baughcum AE, Carmichael SK, et al. Maternal anxiety associated with newborn genetic screening for type 1 diabetes. Diabetes Care 2004;27:392-7.
21. Kerruish NJ, Campbell-Stokes PL, Gray A, et al. Maternal psychological reaction to newborn genetic screening for type 1 diabetes. Pediatrics 2007;120:E324-35.
22. Redondo MJ, Fain PR, Eisenbarth GS. Genetics of type 1A diabetes. Recent Prog Horm Res 2001;56:69-89.
23. Smith J, Jarman M, Osborn M. Doing interpretative phenomenological analysis. In: Murray M, Chamberlain K, eds. Qualitative Health psychology. London: SAGE Publications Ltd, 1999:218-40.
24. Ritchie J, Lewis J. Qualitative research practice: a guide for social science students and researchers. London: Sage, 2003.
25. Broadstock M, Michie S, Marteau T. Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet 2000;8:731-8.
26. Whitmarsh I, Davis AM, Skinner D, et al. A place for genetic uncertainty: parents valuing an unknown in the meaning of disease. Soc Sci Med 2007;65:1082-93.
27. Waisbren SE, Albers S, Amato S, et al. Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress. JAMA 2003;290:2564-72.
28. Campbell E, Ross LF. Parental attitudes regarding newborn screening of PKU and DMD. Am J Med Genet A 2003;120:209-14.
29. Merelle ME, Huisman J, Alderdenvan der Vecht A, et al. Early versus late diagnosis: psychological impact on parents of children with cystic fibrosis. Pediatrics 2003;111:346-50.
30. Duncan RE, Gillam L, Savulescu J, et al. "You're one of us now": young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP). Am J Med Genet C Semin Med Genet 2008;148C:47-55.
31. Miller SM. Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease. Implications for cancer screening and management. Cancer 1995;76:167-77.
32. Hood KK, Bennett Johnson S, Carmichael SK, et al. Depressive symptoms in mothers of infants identified as genetically at risk for type 1 diabetes. Diabetes Care 2005;28:1898-903.
33. O'Hara M, Swain A. Rates and risk of postpartum depression: A meta-analysis. Int Rev Psychiatry 1996;8:37-54.
34. Marteau TM, Lerman C. Genetic risk and behavioural change. BMJ 2001;322:1056-9.
35. Lerman C, Croyle RT, Tercyak KP, et al. Genetic testing: psychological aspects and implications. J Consult Clin Psychol 2002;70:784-97.
36. Castellani C, Southern KW, Brownlee K, et al. European best practice guidelines for cystic fibrosis neonatal screening. J Cyst Fibros 2009;8:153-73.