Genetic testing and mental health: The model of Huntington Disease

Online Journal of Issues in Nursing

Volumn 5, Issue 3, 2000, Pages 45-66

  Williams, Janet K ^a   Schutte, Debra L ^b  

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

^b NONE

Author keywords

Genetic privacy; Genetic testing; Huntington Disease; Mental illness

Indexed keywords

CLINICAL FEATURE; CLINICAL PROTOCOL; GENE MUTATION; GENETIC PROCEDURES; HEALTH CENTER; HEALTH EDUCATION; HEALTH VISITOR; HUNTINGTON CHOREA; INTERPERSONAL COMMUNICATION; LABORATORY TEST; MEDICAL ETHICS; MEDICAL INFORMATION; MEDICAL PRACTICE; MENTAL DISEASE; MENTAL HEALTH; MENTAL HEALTH SERVICE; NURSING; PATIENT COUNSELING; PRIVACY; REVIEW;

EID: 3843125621     PISSN: 10913734     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Review

References (43)

1. American Association of Colleges of Nursing (AACN) (1998). The essentials of baccalaureate education for professional nursing practice. Washington DC: American Association of Colleges of Nursing.
2. Almqvist, E., Bloch, M., Brinkman, R., Craufurd, D., and Hayden, M. On behalf of an international Huntington disease collaborative group (1999). A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington disease. American Journal of Human Genetics, 64, 1293-1304.
3. American Nurses Association (1985). Code for nurses with interpretive statements. Kansas City, MO: American Nurses Association.
4. 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.
5. Barondes, S.H. (1999). An agenda for psychiatric genetics. Archives of General Psychiatry, 56, 549-552.
6. Bird, T.D. (1999). Outrageous fortune: The risk of suicide in genetic testing for Huntington disease. American Journal of Human Genetics, 64, 1289-1292.
7. Campodonico, J., Codori, A., & Brandt. J. (1996). Neuropsychological stability over two years in asymptomatic carriers of the Huntington's disease mutation. Journal of Neurology, Neurosurgery, and Psychiatry, 61, 621-624.
8. Chong, S.S., Almqvist, E., Telenius, H., LaTray, L., Nichol, K., Bourdelat-Parks, B., Goldberg, Y., Haddad, B., Richards, F., Sillence, D., Greenberg, C., Ives, E., Van den Engh, G., Hughs, M., & Hayden, M. (1997). Contribution of DNA sequence and CAG size to mutation frequencies of intermediate alleles for Huntington disease:evidence from single sperm analyses. Human Molecular Genetics, 6 (2), 301-309.
9. Clarke, A., & Flinter, F. (1996). The genetic testing of children: A clinical perspective. In T. Marteau & M. Richards (eds.). The troubled helix: Social and psychological implications of the new human genetics, pp.164-176. Cambridge: Cambridge University Press.
10. Codori, A., & Brandt, J. (1994). Psychological costs and benefits of predictive testing for Huntington disease. American Journal of Medical Genetics, 54, 174-184.
11. Codori, A., Hanson, R., & Brandt, J. (1994). Self-selection for predictive testing for Huntington's disease. American Journal of Medical Genetics (Neuropsychiatric Genetics), 54, 167-173.
12. Collins, F.S., 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. Science, 282, 682-689.
13. Foroud, T., Siemers, E., Kleindorfer, D., Bill, D., Hodes, M., Norton, J., Conneally, P.M., & Christian, J. (1995). Cognitive scores in carriers of Huntington's disease gene compared to noncarriers. Annals of Neurology, 37(5), 657-664.
14. nd Ed. London: W.B.Saunders
15. Huggins, M., Bloch, M., Wiggins, S., Adam, S., Suchowersky, O., Trew, M., Klimek, M., Greenberg, C., Eleff, M., Thompson, L., Knight, J., MacLeod, P. Girard, K., Theilman, J., Hedrick, A., & Hayden, M. (1992). Predictive testing for Huntington disease in Canada: Adverse effects and unexpected results in those receiving a decreased risk. American Journal of Medical Genetics, 42, 508-515.
16. th ed.). St. Louis: Mosby.
17. nd ed.). St. Louis: Mosby.
18. ISONG (1998). Statement on the Scope and Standards of Genetics Clinical Nursing Practice, Washington DC: American Nurses Association.
19. Jaeger, A.S., & Mulholland, W.F. (2000). Impact of genetic privacy legislation on insurer behavior. Genetic Testing, 4(1), 31-42.
20. nd ed. St. Louis: Mosby.
21. Kessler, S. (1988). Preselection: A family coping strategy in Huntington disease. American Journal of Medical Genetics, 31, 617-621.
22. Meissen, G., Mastromauro, C., Kiely, D., McNamara, D., & Myers, R. (1991). Understanding the decision to take the predictive test for Huntington disease. American Journal of Medical Geneticsl 39, 404-410.
23. Nance, M.A. (1996) Invited Editorial "Huntington Disease - Another Chapter Rewritten", American Journal of Human Genetics, 59,1-6.
24. Nance, M.A. (1999, October). Trends in predictive testing-Duration of a testing program. Paper presented at the meeting of the United States Huntington Disease Genetic Testing Group, San Fransisco, CA.
25. NANDA (1996). Nursing diagnoses: Definitions & classification 1997-1998. Philadelphia, PA: North American Nursing Diagnosis Association.
26. NHGRI (June 26, 2000). International Human Genome Sequencing Consortium Announces "Working Draft" of Human Genome. http://www.nhgri.nih.gov/ NEWS/sequencing_consortium.htm
27. nd ed.). New York: Huntington's Disease Society of America.
28. Ryan, S.G. (1999). Genetic susceptibility to neurodevelopmental disorders. Journal of Child Neurology, 14, 187-195.
29. Rushton, A. (1994). Genetics and Medicine in the United States 1800-1922. The Johns Hopkins University Press.
30. Rutter, M., Silberg, J., O. Connor, T., & Simonoff, E. (1999). Genetics and child psychiatry: II Empirical research findings. Journal of Child Psychology and Psychiatry, 49 (1), 19-55.
31. Scanlon, C. (1997). Genetic testing, the law, and you. Office Nurse, 44,46,49.
32. Scanlon, C., & Fibison, W. (1995). Managing genetic information: Implications for nursing practice. Washington, DC: American Nurses Publishing.
33. Shiwach, R. (1994). Psychopathology in Huntington's disease patients. Acta Psychiat. Scandinavia, 90: 241-246.
34. Secretary's Advisory Committee on Genetic Testing (2000). A public consultation on oversight of genetic tests. Bethesda MD: National Institutes of Health. Retrieved September 10, 2000 from the World Wide Web: http://www4.od.nih.gov/oba/sacgt.htm
35. Sobel, S., & Cowan, D.B. (2000). The process of family reconstruction after DNA testing for Huntington disease. Journal of Genetic Counseling, 9(3), 237-251.
36. 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.
37. Tibben, A., Frets, P., van de Kamp, J., Niermeijer, M., Vegter-van der Vlis, M., Roos, R., van Ommen, G., Duivenvoorden, H., & Verhage, F. (1993). Presymptomatic DNA-testing for Huntington disease: Pretest attitutdes and expectations of applicants and their partners in the Dutch program. American Journal of Medical Genetics (Neuropyschiatric Genetics), 48, 10-16.
38. Tibben, A., Timman, R., Bannink, E., Duivenvoorden, H. (1997). Three-year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners. Health Psychology, 16(1): 20-35.
39. Watson, M., Lloyd, S., Davidson, J., Meyer, L., Eeles, Ebbs, S., & Murday, V. (1999). The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer. British Journal of Cancer, 79, 868-874.
40. Went, L., Brohom, J., Cassiman, J., Craufurd, D., Falek, A., Farmer-Little, C., Hayden, M., Kapp, R., Krahnen, K., Martinex-Descals, A., Mol, M. Myrinathopoulos, N., Petit, H., Quaid, K., DeSomviele, C., Taylor, E., Tyler, A. Walker, R., & Wexler, N. (1994). Guidelines for the molecular genetics predictive test in Huntington's disease. Journal of Medical Genetics, 31, 555-559.
41. Williams, J.K., Schutte, D.L., Evers, C., & Forcucci, C. (1999). Adults seeking presymptomatic gene testing for Huntington disease. Image: Journal of Nursing Scholarship, 31(2), 109-114.
42. Willams, J.K., Schutte, D.L., Evers, C., & Holkup, P.A. (2000). Redefinition: Coping with normal results from presymptomtic gene testing for neurodegenerative disorders. Research in Nursing and Health, 23, 260-269.
43. Williams, J.K., Schutte, D.L., Holkup, P.A., Evers, C., & Muilenburg, A. (2000). Psychosocial impact of predictive testing for Huntington disease on support persons. Neuropsychiatric Genetics, American Journal of Medical Genetics, 96(3):353-359.