An international survey of predictive genetic testing in children for adult onset conditions

Genetics in Medicine

Volumn 7, Issue 6, 2005, Pages 390-396

  Duncan, Rony E ^a,b   Savulescu, Julian ^a,c   Gillam, Lynn ^b   Williamson, Robert ^a,b   Delatycki, Martin B ^a,b  

^a ROYAL CHILDREN'S HOSPITAL   (Australia)

^b UNIVERSITY OF MELBOURNE   (Australia)

^c UNIVERSITY OF OXFORD   (United Kingdom)

Author keywords

Adolescent; Child; Genetic screening; Health policy

Indexed keywords

ADOLESCENT; ADULT; ADULT DISEASE; ANXIETY; ARTICLE; AUSTRALIA; CANADA; CHILD; CHILDHOOD; CLINICAL ARTICLE; FEMALE; FOLLOW UP; GENETIC ANALYSIS; GENETIC DISORDER; HEALTH SURVEY; HUMAN; HUNTINGTON CHOREA; INFANT; INTERPERSONAL COMMUNICATION; JUVENILE; MALE; MATURITY; MEDICAL PRACTICE; NEW ZEALAND; NEWBORN; NORMAL HUMAN; ONSET AGE; PARENTAL BEHAVIOR; PHYSICIAN ATTITUDE; PRACTICE GUIDELINE; PREDICTION; UNITED KINGDOM; UNITED STATES; VERTICAL TRANSMISSION;

EMPIRICAL APPROACH; GENETICS AND REPRODUCTION;

ADOLESCENT; AGE OF ONSET; CHILD; CHILD, PRESCHOOL; DATA COLLECTION; ETHICS, MEDICAL; FEMALE; GENETIC PREDISPOSITION TO DISEASE; GENETIC PRIVACY; GENETIC SCREENING; HUMANS; HUNTINGTON DISEASE; INFANT; INFANT, NEWBORN; MALE; PARENTAL CONSENT; PRACTICE GUIDELINES; RISK ASSESSMENT;

EID: 23744498197     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/01.GIM.0000170775.39092.44     Document Type: Article

References (26)

1. International Huntington Association and the World Federation of Neurology Research Group on Huntington's Chorea. Ethical issues policy statement on Huntington's disease molecular genetics predictive test. J Med Genet 1990;27:34-38.
2. International Huntington Association and the World Federation of Neurology Research Group on Huntington's Chorea. Guidelines for the molecular genetics predictive test in Huntington's disease. J Med Genet 1994;31:555-559.
3. Clin Genet Society. The genetic testing of children. Working Party of the Clin Genet Society (UK). J Med Genet 1994;31:785-97.
4. American Society of Human Genetics BoD, American College of Medical Genetics BoD. Points to Consider: Ethical, Legal and Psychosocial Implications of Genetic Testing in Children and Adolescents. Am J Hum Genet 1995;57:1233-1241.
5. Human Genetics Society of Australasia. Predictive Testing in Children and Adolescents: Human Genetics Society of Australasia, 2003.
6. Clarke A, Flinter F. The genetic testing of children: a clinical perspective. In: Marteau T, Richards M, eds. The troubled helix: Social and psychological implications of the new human genetics. Cambridge: Cambridge University Press, 1996:164-176.
7. Wertz DC, Fanos JH, Reilly PR. Genetic testing for children and adolescents: Who decides? JAMA 1994;272:875-81.
8. Holland J. Should parents be permitted to authorize genetic testing for their children. Family Law Quarterly 1997;31:321-353.
9. Meiser B, Gleeson MA, Tucker KM. Psychological impact of genetic testing for adult-onset disorders: An update for clinicians. MJA 2000;172:126-129.
10. Codori AM, Petersen GM, Boyd PA, Brandt J, Giardiello FM. Genetic testing for cancer in children. Short-term psychological effect. Arch Pediatr Adolesc Med 1996; 150:1131-8.
11. Michie S, McDonald V, Bobrow M, McKeown C, Marteau T. Parents responses to predictive genetic testing in their children: Report of a single case study. J Med Genet 1996;33:313-318.
12. Michie S, Bobrow M, Marteau TM. Predictive genetic testing in children and adults: a study of emotional impact. J Med Genet 2001;38:519-26.
13. Codori AM, Zawacki KL, Petersen GM et al. Genetic testing for hereditary colorectal cancer in children: long-term psychological effects. Am J Med Genet 2003;116A:117-28.
14. 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;61:1163-1168.
15. Weithorn LA, Campbell SB. The competency of children and adolescents to make informed treatment decisions. Child Dev 1982;53:1589-98.
16. Petersen AC, Leffert N. Developmental Issues Influencing Guidelines for Adolescent Health Research: A Review. J Adolesc Health 1995;17:298-305.
17. Toner K, Schwartz R. Why a teenager over Age 14 should be able to consent, rather than merely assent, to participation as a human subject of research. Am J Bioeth 2003;3:38-40.
18. Santelli JS, Smith Rogers A, Rosenfeld WD, et al. Guidelines for Adolescent Health Research: A position paper for the society of adolescent medicine. J Adolesc Health 2003;33:396-409.
19. Sanci L, Sawyer SM, Weller PJ, Bond LM, Patton GC. Youth health research ethics: time for a mature-minor clause. MJA 2004;180:336-338.
20. Almqvist E, Brinkman R, Wiggins S, Hayden M. Psychological consequences and predictors of adverse events in the first 5 years after predictive testing for Huntington's disease. Clin Genet 2003;64:300-309.
21. Almqvist EW, Bloch M, Brinkman R, Craufurd D, Hayden MR. A Worldwide Assessment of the Frequency of Suicide, Suicide Attempts, or Psychiatric Hospitalisation after Predictive Testing for Huntington Disease. Am J Hum Genet 1999;64: 1293-1304.
22. Michie S, Marteau TM. Predictive genetic testing in children: The need for psychological research. Br J Health Psychol 1996;1:3-14.
23. Bloch M, Hayden MR. Opinion: Predictive testing for Huntington Disease in childhood: challenges and implications. Am J Hum Genet 1990;46:1-4.
24. Marteau TM. The genetic testing of children. J Med Genet 1994;31:743.
25. Michie S. Predictive testing in children: paternalism or empiricism? In: Marteau T, Richards M, eds. The troubled helix: Social and psychological implications of the new human genetics. Cambridge: Cambridge University Press, 1996:177-186.
26. Fryer A. The genetic testing of children. J R Soc Med 1997;90:419-421.