Genetic service providers' practices and attitudes regarding adolescent genetic testing for carrier status

Genetics in Medicine

Volumn 9, Issue 2, 2007, Pages 101-107

  Multhaupt Buell, Trisha J ^a,b   Lovell, Anne ^b   Mills, Lisa ^b   Stanford, Kevin E ^c   Hopkin, Robert J ^b,c  

^a UNIVERSITY OF CINCINNATI   (United States)

^b CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

^c UNIVERSITY OF CINCINNATI COLLEGE OF MEDICINE   (United States)

Author keywords

Adolescent; Carrier testing; Genetic testing; Policy guidelines

Indexed keywords

ARTICLE; COMPETENCE; CONTROLLED STUDY; FEMALE; GENETIC PREDISPOSITION; GENETIC SERVICE; HEALTH PERSONNEL ATTITUDE; HEALTH SURVEY; HETEROZYGOTE; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL SOCIETY; PRACTICE GUIDELINE; PREGNANCY; SEXUAL BEHAVIOR;

ADOLESCENT; ADOLESCENT HEALTH SERVICES; FEMALE; GENETIC SCREENING; GENETICS, MEDICAL; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH PERSONNEL; HETEROZYGOTE; HUMANS; MALE; QUESTIONNAIRES;

EID: 33847009365     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e3180306899     Document Type: Article

References (20)

1. McConkie-Rosell A, Spiridigliozzi GA. "Family matters": a conceptual framework for genetic testing in children. J Genet Counsel 2004;13:9-29.
2. Points to consider: ethical, legal and psychological implications of genetic testing in children and adolescents. Am J Hum Genet 1995;57:1233-1241.
3. Report of a Working Party of the Clinical Genetics Society (UK). The genetic testing of children. J Med Genet 1994;31:785-795.
4. American Academy of Pediatrics Committee on Bioethics 2000-2001, Ethical issues with genetic testing in pediatrics. Pediatrics 2001;107.
5. Fryer A. Inappropriate genetic testing of children. Arch Dis Child 2000;83:7283-7285.
6. Michie S, Marteau TM. Predictive genetic testing in children: the need for psychological research. Br J Health Psychol 1996;1:3-14.
7. Fanos JH. Developmental tasks of childhood and adolescence: implications for genetic testing. Am J Med Genet 1997;71:22-28.
8. Ross LF, Moon MR. Ethical issues in genetic testing of children. Arch Pediatr Adolesc Med 2000;154:873-879.
9. Wertz DC. International perspectives. In: Clarke AJ, editor. The genetic testing of children. Oxford: BIOS Scientific Publishers, 1998.
10. National Institutes of Health Consensus Development Conference Statement, genetic testing for cystic fibrosis. Arch Intern Med 1999;159:1529-1539.
11. Gregg AR, Simpson JL. Genetic screening for cystic fibrosis. Obstet Gynecol Clin North Am 2002;29:329-340.
12. Fryer A. Genetic testing of children. Arch Dis Child 1995;73:97-99.
13. The Alan Guttmacher Institute, US teenage pregnancy statistics: National and state trends and trends by race and ethnicity. www.guttmacher.org/pubs/2006/ 09/12/USTPstats.pdf; accessed October 3, 2006.
14. Shinaman A, Bain LJ, Shoulson I. Preempting genetic discrimination and assaults on privacy: report of a symposium. Am J Med Genet 2003;120A:589-593.
15. Clow CL, Scriver CR. Knowledge about and attitudes toward genetic screening among high-school students: the Tay-Sachs experience. Pediatrics 1977;59:86-91.
16. Jarvinen O, Lehesjoki A, Lindlof M, Uutela A, Kaariainen H. Carrier testing of children for two X-linked diseases: a retrospective study of comprehension of the test results and social and psychological significance of the testing. Pediatrics 2000;106:1460-1466.
17. Lena-Russo D, Badens C, Aubinaud M, Merono F, et al. Outcome of a school screening programme for carriers of haemoglobin disease. J Med Screen 2002;9:67-70.
18. Michie S, Bobrow M, Marteau TM. Predictive genetic testing in children and adults: a study of emotional impact. J Med Genet 2001;38:519-528.
19. Zeesman S, Clow CL, Cartier L, Scriver CR. A private view of heterozygosity: eight-year follow-up on carriers of the Tay-Sachs gene detected by high school screening in Montreal. Am J Med Genet 1984;18:769-778.
20. Barlow-Stewart K, Burnett L, Proos A, Howell V, et al. A genetic screening programme for Tay-Sachs disease and cystic fibrosis for Australian Jewish high school students. J Med Genet 2003;40:e45.