Long-term impact of Huntington disease linkage testing

American Journal of Medical Genetics

Volumn 70, Issue 4, 1997, Pages 365-370

  Taylor, Catherine A ^a   Myers, Richard H ^a  

^a BOSTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

Huntington disease; Predictive testing; Psychological impact

Indexed keywords

ADULT; ARTICLE; CLINICAL ARTICLE; DNA POLYMORPHISM; FEMALE; GENETIC ANALYSIS; GENETIC COUNSELING; GENETIC LINKAGE; HIGH RISK POPULATION; HUMAN; HUNTINGTON CHOREA; MALE; PREDICTION; PRIORITY JOURNAL; PSYCHOLOGICAL ASPECT; SELF ESTEEM; WELLBEING;

ADULT; ATTITUDE TO HEALTH; DATA COLLECTION; EDUCATION; FEMALE; FOLLOW-UP STUDIES; GENETIC SCREENING; HUMANS; HUNTINGTON DISEASE; LINKAGE (GENETICS); MALE; MARITAL STATUS; MENTAL HEALTH; MIDDLE AGED; OCCUPATIONS; PREDICTIVE VALUE OF TESTS; RELIGION AND MEDICINE; REPRODUCTION;

EID: 0031004006     PISSN: 01487299     EISSN: None     Source Type: Journal    
DOI: 10.1002/(SICI)1096-8628(19970627)70:4<365::AID-AJMG7>3.0.CO;2-S     Document Type: Article

References (35)

1. Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh, J (1961): Aninventory for measuring depression. Arch Gen Psychiatry 4:561-571.
2. Beck AT, Weissman A, Lester D, Trexler L (1974): The measurement of pessimism: The hopelessness scale. J Consult Clin Psychol 42:861-865.
3. Bloch M, Adam S, Wiggins S, Huggins M, Hayden M (1992):Predictive testing for Huntington disease in Canada: The experience of those receiving an increased risk. Am J Med Genet 42:499-507.
4. Caine ED, Shoulson I (1983): Psychiatric syndromes in Huntington's disease. Am J Psychiatry 140:728-733.
5. Codori AM, Brandt J (1994): Psychological costs and benefits of predictive testing for Huntington's disease. Am J Med Genet 54:174-184.
6. Codori AM, Hanson R, Brandt J (1994): Self-selection in predictive testing for Huntington's disease. Am J Med Genet 54:167-173.
7. Derogatis L (1983): "SCL-90R Manual-II." Towson, MD: Clinical Psychometric Research.
8. Diamond R, White R, Myers R, Mastromauro C, Koroshetz W, Butters N, Rothstein D, Moss M, Vasterling J (1992): Evidence of presymptomatic cognitive decline in Huntington's disease. J Clin Exp Neuropsychol 14:961-975.
9. Endicott J, Spitzer RL (1978): A diagnostic interview: Theschedule for affective disorders and schizophrenia. Arch Gen Psychiatry 35:837-844.
10. Guidelines for the Molecular Genetics Predictive Test in Huntington's disease (1994). Neurology 44:1533-1536.
11. Gusella JF, Wexler NS, Conneally PM, Naylor SL, Anderson MA, Tanzi RE, Watkins PC, Ottina K, Wallace MR, Sakaguchi AY, Young AB, Shoulson I, Bonilla E, Martin JB (1983): A polymorphic DNA marker genetically linked to Huntington's disease. Nature 306:234-238.
12. Huggins M, Bloch M, Wiggins S, Adam S, Suchowersky O, Trew M, Klimek M, Greenberg CR, Eleff M, Thompson LP, Knight J, MacLeod P, Girard K, Theilmann J, Hedrick A, Hayden MR (1992): Predictive testing for Huntington disease in Canada: Adverse effects and unexpected results in those receiving a decreased risk. Am J Med Genet 42:508-515.
13. Huntington G (1872): On chorea. Med Surg Rep 26:317-321.
14. Huntington's Disease Collaborative Research Group (HDCRG) (1993): A novelgene containing a trinucleotide repeat that is expanded andunstable on Huntington's disease chromosomes. Cell 72:971-983.
15. Jacopini GA, D'Amico R, Frontali M, Vivona G (1992): Attitudes of persons at risk and their partners toward predictive testing. Birth Defects 28: 113-117.
16. Kessler S (1987): Psychiatric implications of presymptomatic testing for Huntington's disease. Am J Orthopsychiatry 57:212-219.
17. Kessler S (1994): Predictive testing for Huntington disease: A psychologist's view. Am J Med Genet 54:161-166.
18. Levin JS (1994): Religion and health: Is there an association, is it valid, and is it causal? Soc Sci Med 38:1475-1482.
19. Mastromauro CA, Myers RH, Berkman B (1987): Attitudes towardpresymptomatic testing in Huntington disease. Am J Med Genet 26:271-282.
20. McKee DD, Chappel JN (1992): Spirituality and medical practice. J Fam Prac 35:201-208.
21. Messein GJ, Mastromauro CA, Kiely DK, McNamara DS, Myers RH (1991): Understanding the decision to take the predictive test for Huntington disease. Am J Med Genet 39:404-410.
22. Meissen GJ, Myers KH, Mastromauro CA, Koroshetz WJ, Klinger KW, Farrer LA, Watkins PA, Gusella JF, Bird ED, Martin JB (1988): Predictive testing for Huntington's disease with use of a linked DNA marker. N Engl J Med 318:535-542.
23. Moss MB, Albert MS, Butters N, Payne M (1986): Differential patterns of memory loss among patients with Alzheimer's disease, Huntington's disease, and alcoholic Korsakoff's syndrome. Arch Neurol 43:239-246.
24. Quaid KA, Morris M (1993): Reluctance to undergo predictive testing: The case of Huntington disease. Am J Med Genet 45:41-45.
25. SAS User's Guide: Statistics. SAS Institute, Inc., Cary, NC.
26. Schoenfeld M, Myers RH, Cupples, LA, Berkman B, Sax DS, Clark E(1984): Increased rate of suicide among patients with Huntington's disease. J Neurol Neurosurg Psychiatry 47:1283-1287.
27. Steenstraten IM vd, Tibben A, Roos RAC, Kamp JJP vd, Niermeijer MF (1994): Predictive testing for Huntington disease: Nonparticipants compared with participants in the Dutch program. Am J Med Genet 55:618-625.
28. Tibben A, Frets PG, Kamp JJP vd, Niermeijer MF, Vegter-vd Vlis M, Roos RAC, Ommen GJB v, Duivenvoorden HJ, Verhage F (1993a):Presymptomatic DNA-testing for Huntington disease: Pretest attitudes and expectations of applicants and their partners in the Dutch program. Am J Med Genet 48:10-16.
29. Tibben A, Frets PG, Kamp JJP vd, Niermeijer MF, Vegter-vd Vlis M, Roos RAC, Rooijmans HGM, Ommen GJB v, Verhage F (1993b): On attitudes and appreciation 6 months after predictive DNA testing for Huntington disease in the Dutch program. Am J Med Genet 48:103-111.
30. Tibben A, Duivenvoorden HJ, Vegter-vd Vlis M, Niermeijer MF, Frets PG, Kamp JJP vd, Roos RAC, Rooijmans HGM, Verhage F (1993c): Presymptomatic DNA testing for Huntington disease: Identifying the need for psychological intervention. Am J Med Genet 48:137-144.
31. Tibben A, Vegter-vd Vlis M, Skraastad MI, Leeuwen-Cornelisse ISJ, Frets PG, Kamp vd JJP, Niermeijer MF, Ommen GJB v, Roos RAC, Rooijmans HGM, Verhage F (1992): Presymptomatic DNA-testing for Huntington disease in the Netherlands. Birth Defects 28:127-131.
32. Wiggins S, Whyte P, Huggins M, Adam S, Theilmann J, Bloch M, Sheps SB, Schechter MT, Hayden MR (1992): The psychological consequences of predictive testing for Huntington's disease. N Engl J Med 327:1401-1405.
33. Williams DR, Larson DB, Buckler RE, Heckmann RC, Pyle CM (1991): Religion and psychological distress in a community sample. Soc Sci Med 32:1257-1262.
34. Wolff G, Walter W (1992): Attitudes of at-risk persons for Huntington disease toward predictive testing. Birth Defects 28:119-126.
35. World Federation of Neurology: Research Committee Research Group on Huntington's chorea (1989): Ethical issues policy statement on Huntington's disease molecular genetics predictive test. J Neurol Sci 94: 327-332.