Should children and adolescents undergo genetic testing?

Pediatric Annals

Volumn 33, Issue 11, 2004, Pages 762-769

  Ross, Lainie Friedman ^a,b  

^a UNIVERSITY OF CHICAGO   (United States)

^b UNIVERSITY OF CHICAGO   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; CHILD; DECISION MAKING; DIAGNOSTIC TEST; GENETIC PROCEDURES; GENETIC SCREENING; HETEROZYGOTE; HIGH RISK POPULATION; HUMAN; KARYOTYPE; NEWBORN SCREENING; REVIEW; SOCIAL PSYCHOLOGY;

EID: 8744252638     PISSN: 00904481     EISSN: None     Source Type: Journal    
DOI: 10.3928/0090-4481-20041101-11     Document Type: Review

References (35)

1. Holtzman NA. Primary care physicians as providers of frontline genetic services. Fetal Diagn Ther. 1993;8 Suppl 1:213-219.
2. Holtzman NA, Watson MS, eds. Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing. Baltimore, MD: Johns Hopkins University Press; 1999.
3. Liede A, Karlan BY, Narod SA. Cancer risks for male carriers of germline mutations in BRCA1 or BRCA2: a review of the literature. J Clin Oncol. 2004;22(4):735-742.
4. Prevalence and penetrance of BRCA1 and BRCA2 mutations in a population-based series of breast cancer cases. Anglian Breast Cancer Study Group. Brit J Cancer. 2000;83(10): 1301-1308.
5. Madan K, Nieuwint AW, van Bever Y. Recombination in a balanced complex translocation of a mother leading to a balanced reciprocal translocation in the child. Review of 60 cases of balanced complex translocations. Hum Genet. 1997;99(6):806-815.
6. US National Screening Status Report. Available at: http://genes-r-us. uthscsa.edu/nbsdisorders.pdf. Accessed September 28, 2004.
7. Southern KW. Littlewood JM. Newborn screening programmes for cystic fibrosis. Paediatr Respir Rev. 2003;4(4):299-305.
8. Campbell ED, Ross LF. Incorporating newborn screening into prenatal care. Am J Obstet Gynecol. 2004;190(4):876-877.
9. Larsson A, Therrell BL. Newborn screening: the role of the obstetrician. Clin Obstet Gynecol. 2002;45(3):697-710.
10. Tandem mass spectrometry in newborn screening. American College of Medical Genetics/American Society of Human Genetics Test and Technology Transfer Committee Working Group. Genet Med. 2000;2(4):267-269.
11. Serving the family from birth to the medical home. A report from the Newborn Screening Task Force convened in Washington DC, May 10-11, 1999. Pediatrics. 2000;106(2 Pt 2): 383-427.
12. Squier M, Chamberlain P, Zaiwalla Z, et al. Five cases of brain injury following amniocentesis in mid-term pregnancy. Dev Med Child Neurol. 2000;42(8):554-560.
13. Ligon AH, Kashork CD, Richards CS, Shaffer LG. Identification of female carriers for Duchenne and Becker muscular dystrophies using a FISH-based approach. Eur J Hum Genet. 2000;8(4):293-298.
14. Muntoni F, Fisher I, Morgan JE, Abraham D. Steroids in Duchenne muscular dystrophy: from clinical trials to genomic research. Neuromuscul Disord. 2002;12 Suppl 1:S162-165.
15. Robertson S, Savulescu J. Is there a case in favour of predictive genetic testing in young children? Bioethics. 2001;15(1):26-49.
16. Ross LF. Predictive genetic testing for conditions that present in childhood. Kennedy Inst Ethics J. 2002;12(3):225-244.
17. Broadstock M, Michie S, Marteau T. Psychological consequences of predictive genetic testing: a systematic review. Europ J Hum Genet. 2000;8(10):731-738.
18. Davis MP, Darden PM. Use of complementary and alternative medicine by children in the United States. Arch Pediatr Adolesc Med. 2003;157(4):393-396.
19. Bradley DM, Parsons EP, Clarke AJ. Experience with screening newborns for Duchenne muscular dystrophy in Wales. BMJ. 1993;306(6874):357-360.
20. Scheuerbrandt G, Lundin A, Lovgren T, Mortier W. Screening for Duchenne muscular dystrophy: an improved screening test for creatine kinase and its application in an infant screening program. Muscle Nerve. 1986;9(1):11-23.
21. Tymstra T. The imperative character of medical technology and the meaning of "anticipated decision regret." Int J Technol Assess Health Care. 1989;5(2):207-213.
22. Rebbeck TR, Friebel T, Lynch HT, et al. Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE Study Group. J Clin Oncol. 2004;22(6):1055-1062.
23. Campbell ED, Ross LF. Parental Attitudes and Beliefs Regarding the Genetic Testing of Children, Community Genetics, in press.
24. Institute of Medicine (IOM). Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: National Academies Press; 1994.
25. Clarke A. The genetic testing of children. Working Party of the Clinical Genetics Society (UK). J Med Genet. 1994;31(10):785-797;
26. 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(5):1233-1241.
27. Nelson RM, Botkjin JR, Kodish ED, et al.; Committee on Bioethics. Ethical issues with genetic testing in pediatrics. Pediatrics. 2001;107(6):1451-1455.
28. Hamann HA, Croyle RT, Venne VL, et al. Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation. Am J Med Genet. 2000; 92(1):25-32.
29. Geller G, Tambor ES, Bernhardt BA, Wissow LS, Fraser G. Mothers and daughters from breast cancer families: a qualitative study of their perceptions of risks and benefits associated with minors' participation in genetic susceptibility research. J Am Med Womens Assoc. 2000;55(5):280-284.
30. Wertz DC, Reilly PR. Laboratory policies and practices for the genetic testing of children: a survey of the Helix network. Am J Hum Genet. 1997;61(5):1163-1168.
31. Dalby S. GIG [Genetic Interest Group] response to the UK Clinical Genetics Society report "The genetic testing of children." J Med Genet. 1995;32(6):490-491.
32. Balfour-Lynn I, Madge S, Dinwiddie R. Testing carrier status in siblings of patients with cystic fibrosis. Arch Dis Child. 1995;72(2):167-168.
33. Marteau TM, van Duijn M, Ellis I. Effects of genetic screening on perceptions of health: a pilot study. J Med Genet. 1992;29(1):24-26.
34. Axworthy D, Brock DJ, Bobrow M, Marteau TM. Psychological impact of population-based carrier testing for cystic fibrosis: 3-year follow-up. UK Cystic Fibrosis Follow-Up Study Group. Lancet. 1996;347(9013):1443-1446.
35. Clow CL, Scriver CR, Knowledge about and attitudes toward genetic screening among high-school students: the Tay-Sachs experience. Pediatrics. 1977;59(1):86-90.