Impact of genome research on children and their families

Journal of Pediatric Nursing

Volumn 15, Issue 4, 2000, Pages 207-211

  Williams, Janet K ^a  

^a UNIVERSITY OF IOWA COLLEGE OF NURSING   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

BIOMEDICAL TECHNOLOGY ASSESSMENT; CHILD; CHILD WELFARE; FAMILY HEALTH; FORECASTING; GENETIC DISORDER; GENETIC SCREENING; GENETICS; HETEROZYGOTE DETECTION; HUMAN; HUMAN GENOME PROJECT; PATIENT ADVOCACY; PEDIATRIC NURSING; REVIEW;

CHILD; CHILD WELFARE; FAMILY HEALTH; FORECASTING; GENETIC DISEASES, INBORN; GENETIC SCREENING; HETEROZYGOTE DETECTION; HUMAN GENOME PROJECT; HUMANS; PATIENT ADVOCACY; PEDIATRIC NURSING; TECHNOLOGY ASSESSMENT, BIOMEDICAL;

EID: 0034241858     PISSN: 08825963     EISSN: None     Source Type: Journal    
DOI: 10.1053/jpdn.2000.8043     Document Type: Article

References (27)

1. ASHG/ACMG Report. (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. Benkendorf, J., Reutenauer, J., Hughes, C., Eads, N., Willison, J., Powers, M., & Lerman, C. (1997). Patient's attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. American Journal of Medical Genetics, 73, 296-303.
3. Broholm, J., Cassiman, J., Craufurd, D., Falek, A., Farmer-Littel, C., Hayden, M., Kapp, R., Krahnene, K., Martinex-Descals, A., Mol, M., Myrianthopoulos, N., Petit, H., Quaid, K., De Somviele, C., Taylor, E., Tyler, A., Walker, R., Went, L., & Wexler, N. (1994). Guidelines for the molecular genetics predictive test in Huntington's disease. Journal of Medical Genetics, 31, 555-559.
4. Brown, T., & Schwind, E. (1999). Update and review: Cystic fibrosis. Journal of Genetic Counseling, 8(3), 137-162.
5. Brown, W.T. (1996). The molecular biology of the Fragile X mutation. In R.J. Hagerman & A. Cronister (Eds.), Fragile X syndrome: Diagnosis, treatment and research (2nd ed., pp. 88-113). Baltimore: The Johns Hopkins University Press.
6. Collins, F. (1999). Shattuck lecture: Medical and societal consequences of the human genome project. The New England Journal of Medicine, 341(1), 28-37.
7. Collins, F. (2000, February). Opening address. Paper presented at the meeting of The National Coalitions for Health Professional Education in Genetics, Bethesda, MD.
8. Collins, F., Patrinos, A., Jordan, E., Chakravarti, A., Gesteland, R., Walters, L., and the members of the DOE and NIH planning groups. (1998). New goals for the U.S. Human Genome Project: 1998-2003. Science, 282, 682-689.
9. Delbecco, R. (1986). A turning point in cancer research: Sequencing the human genome. Science, 231, 169-174.
10. Ethical, Legal, and Social Implications Research Program. (1999). Division of Extramural Research [On-line]. Available: http://www.nhgri.nih.gov:80/About_NHGRI/Der/Elsi/
11. Fanos, J.H., & Johnson, J.P. (1995). Barriers to carrier testing for CF siblings: The importance of not knowing. American Journal of Human Genetics, 59, 85-91.
12. Geller, G. (1995). Cystic fibrosis and the pediatric caregiver: Benefits and burdens of genetic technology. Pediatric Nursing, 21(1), 57-61.
13. Gusella, J., Wexler, N., Conneally, P., Naylor, S., Anderson, M., Tanzi, R., Watkins, P., Ottina, K., Wallace, M., Sakaguchi, A., Young, A., Shoulson, I., Bonilla, E., & Martin, J. (1983). A polymorphic DNA marker genetically linked to Huntington disease. Nature, 306, 234-239.
14. The Huntington's Disease Collaborative Research Group. (1993). A novel gene containing a trinucleotide repeat that is expanded and unstable in Huntington's disease chromosomes. Cell, 72, 971-983.
15. International Society of Nurses in Genetics, Inc. (1998). Statement on the scope and standards of genetics clinical nursing practice. Washington, DC: American Nurses Association.
16. Iowa Interventions Project. (2000). In J.C. McCloskey & G.M. Bulechek (Eds.), Nursing interventions classification (3rd ed.). St. Louis: Mosby.
17. Jorde, L.B., Carey, J.C., Bamshad, M.J., & White, R.L. (1999). Medical Genetics (Vol 2). St. Louis: Mosby.
18. Kingman, S. (1995). Does a CF gene confer a hidden advantage? The Journal of NIH Research, 7, 34-35.
19. McConkie-Rosell, A., Sprirdigliozzi, G., Iafolla, T., Tarleton, J., & Lachiewicz, A. (1997). Carrier testing in the fragile-X syndrome: Attitudes and opinions of obligate carriers. American Journal of Medical Genetics, 68, 62-69.
20. Miki, Y., Swensen, J., Shattuck-Eidens, D., Futreal, P., Harshman, K., Tavitgian, S., Lui, Q., Cochran, C., Bennett, L., & Ding, W. (1994). A strong candidate for the breast-ovarian cancer susceptibility gene BRCA1. Science, 266, 67-71.
21. Nance, M., & The US Huntington Disease Genetic Testing Group. (1997). Genetic testing of children at risk for Huntington's disease. Neurology, 49, 1048-1053.
22. National Institutes of Health. (1997). NIH consensus statement: Genetic testing for cystic fibrosis, 15(4), U.S. Department of Health and Human Services, Bethesda, MD.
23. Patanaude, A., Basili, L., Fairclough, D., & Li, F. (1996). Attitudes of 47 mothers of pediatric oncology patients toward genetic testing for cancer predisposition. Journal of Clinical Oncology, 14(2), 415-421.
24. Rommens, J., Iannuzzi, M., Kerem, B., Drumm, M., Melmer, G., Dean, M., Rozmahel, R., Cole, J., Kennedy, D., & Hidaka, N. (1989). Identification of the cystic fibrosis gene: Chromosome walking and jumping. Science, 245, 1059-1065.
25. Scanlon, C., & Fibison, W. (1995). Managing Genetic Information: Implications for Nursing Practice. Washington, DC: American Nurses Association.
26. Williams, J.K., & Schutte, D.L. (1997). Benefits and burdens of genetic carrier identification. Western Journal of Nursing Research, 19(1), 71-81.
27. Wooster, R., Bignell, G., Lancaster, J., Swift, S., Seal, S., Mangion, J., & Collins, N. (1995). Identification of the breast cancer susceptibility gene BRCA2. Nature, 378, 789-792.