Psychological aspects of genetic counselling: A review of the experience with Huntington's disease

Patient Education and Counseling

Volumn 32, Issue 1-2, 1997, Pages 33-40

  Van 'T Spijker, Adriaan ^a   Ten Kroode, Herman F J ^b  

^a ERASMUS UNIVERSITY ROTTERDAM   (Netherlands)

^b UTRECHT UNIVERSITY   (Netherlands)

Author keywords

Huntington's disease; Presymptomatic DNA testing; Psychological aspects of genetic Counselling; Review

Indexed keywords

DNA DETERMINATION; EMOTIONAL STRESS; FAMILY THERAPY; GENETIC COUNSELING; GENETIC RISK; HETEROZYGOTE; HUMAN; HUNTINGTON CHOREA; ONSET AGE; PRIORITY JOURNAL; REVIEW;

EID: 0342327379     PISSN: 07383991     EISSN: None     Source Type: Journal    
DOI: 10.1016/S0738-3991(97)00066-9     Document Type: Article

References (44)

1. Kessler S. Genetic counselling: Psychological dimensions. New York: Academic Press, 1979.
2. Bird S.J. Presymptomatic testing for Huntington's Disease. JAMA. 253:1985;3286.
3. Hayden M. Huntington's chorea. New York: Springer Verlag, 1981.
4. Harper PS. Huntington's disease. London: W.B. Saunders, 1991.
5. Bloch M., Fahy M., Fox S., Hayden M.R. Predictive testing for Huntington's Disease: II. Demographic characteristics, life-style patterns, attitudes, and psychosocial assessments of the first fifty-one test candidates. Am J Med Genet. 32:1989;217-224.
6. Bloch M., Hayden M.R. Predictive testing for Huntington's Disease in childhood: Challenges and implications. Am J Hum Genet. 46:1990;1-4.
7. Bloch M., Adam S., Wiggins S., Huggins M., Hayden M.R. Predictive testing for Huntington's Disease in Canada: The experience of those receiving an increased risk. Am J Med Genet. 42:1992;499-507.
8. Brandt J., Quaid K.A., Folstein S.E.et al. Presymptomatic diagnosis of delayed-onset disease with linked DNA markers. The experience in Huntington's Disease. JAMA. 261:1989;3108-3114.
9. Brock, DJ, Mennie M, Curtis A, et al. Predictive testing for Huntington's Disease with linked DNA markers. The Lancet 1989;ii:463-6.
10. Chapman M.A. Predictive testing for adult-onset genetic disease: Ethical and legal implications of the use of linkage analysis for Huntington Disease. Am J Hum Genet. 47:1990;1-3.
11. Chapman M.A. Canadian experience with predictive testing for Huntington Disease: Lessons for genetic testing centers and policy makers. Am J Med Genet. 42:1992;491-498.
12. Codori A.M., Brandt J. Psychological costs and benefits of predictive testing for Huntington's Disease. Am J Med Genet (Neuropsychiatric Genetics). 54:1994;174-184.
13. Codori A.M., Slavney P.R., Young C., Miglioretti D.L., Brandt J. Predictors of psychological adjustment to genetic testing for Huntington's Disease. Health Psychol. 16:1997;36-50.
14. Craufurd D.I.O., Harris R. Ethics of predictive testing for Huntington's chorea: the need for more information. Br Med J. 293:1986;249-251.
15. Craufurd D, Dodge A, Kerzin-Storbarr L, Harris R. Uptake of presymptomatic predictive testing for Huntington's disease. The Lancet 1989(ii);603-5.
16. Fox S., Bloch M., Fahy M., Hayden M. Predictive testing for Huntington's Disease: I. Description of a pilot project in British Columbia. Am J Med Genet. 32:1989;211-216.
17. Hayes C. Genetic testing for Huntington's Disease - a family issue. New Engl J Med. 327:1992;1449-1451.
18. Huggins M., Bloch M., Wiggins S.et al. Predictive testing for Huntington's Disease in Canada: Adverse effects and unexpected results in those receiving a decreased risk. Am J Med Genet. 42:1992;508-515.
19. Kessler S., Field T., Worth L., Mosbarger H. Attitudes of persons at risk for Huntington Disease toward predictive testing. Am J Med Genet. 26:1987;259-270.
20. Kessler S. Preselection: A family coping strategy in Huntington Disease. Am J Med Genet. 31:1988;617-621.
21. Kessler S. Reinventing the wheel. Am J Med Genet. 45:1993;694-695.
22. Markel D.S., Young A.B., Penney J.B. At-risk persons' attitudes toward presymptomatic and prenatal testing of Huntington Disease in Michigan. Am J Med Genet. 26:1987;295-305.
23. Mastromauro C., Myers R.H., Berkman B. Attitudes toward presymptomatic testing in Huntington Disease. Am J Med Genet. 26:1987;271-282.
24. Meissen G.J., Berchek R.L. Intended use of predictive testing by those at risk for Huntington Disease. Am J Med Genet. 26:1987;283-293.
25. Meissen G.J., Myers R.H., Mastromauro C.A.et al. Predictive testing for Huntington's disease with use of a linked DNA marker. N Engl J Med. 318:1988;535-542.
26. Morris MJ, Tyler A, Lazarou L, Merdith L, Harper, PS. Problems in genetic prediction for Huntington's disease. The Lancet 1989(ii);601-3.
27. Quaid K.A., Brandt J., Folstein S.E. The decision to be tested for Huntington's disease. JAMA. 257:1987;3362.
28. Quaid K.A., Wesson M.K. Exploration of the effects of predictive testing for Huntington Disease on intimate relationships. Am J Med Genet. 57:1995;46-51.
29. Roos R.A.C., Vegter-van der Vlis M., Tibben A., Skraastad M.I., Pearson P.I. Procedure en eerste resultaten van presymptomatich DNA-onderzoek bij de chorea van Huntington (Procedure and first results of presymptomatic DNA-testing for Huntington). Ned Tijdschr Geneeskd. 134:1990;704-707.
30. Terrenoire G. Huntington's disease and the ethics of genetic prediction. J Med Eth. 18:1992;79-85.
31. Tibben, A. What is knowledge but grieving: on psychological effects of DNA-testing for Huntington's disease [PhD-thesis]. Rotterdam: Erasmus University, 1993.
32. Tibben A., Timman R., Bannink E.C., Duivenvoorden H.J. Three-year follow-up after presymptomatic testing for Huntington's Disease in tested individuals and partners. Health Psychol. 16:1997;20-35.
33. Tyler A., Ball D., Craufurd D. Presymptomatic testing for Huntington's disease in the United Kingdom. BMJ. 304:1992;1593.
34. Wiggins S., Whyte P., Huggins M.et al. The psychological consequences of predictive testing for Huntington's disease. New Engl J Med. 327:1992;1401-1405.
35. Tibben A., Vegter-van der Vlis M., Roos R.A.C., Van de Kamp J.J.P., Frets P.G., Verhage F. Presymptomatische DNA-diagnostiek bij de chorea van Huntington: reacties op de zekerheid niet-gendrager te zijn (Presymptomatic DNA-diagnosis for Huntington: reactions to the knowledge not to carry the gene). Ned Tijdschr Geneeskd. 134:1990;701-704.
36. Tibben A., Vegter-van der Vlis M., Niermeijer M.F. Testing for Huntington's disease with support for all parties. Lancet. 335:1990;553.
37. Kessler S. Forgotten person in the Huntington family. Am J Med Genet. 48:1993;145.
38. Kessler S. Psychological aspects of genetic counselling: VI. A critical review of the literature dealing with education and reproduction. Am J Med Genet. 34:1989;340-353.
39. Grosfeld F.J.M., Lips C.J.M., ten Kroode H.F.J., Beemer F.A., van Spijker H.G., Brouwers-Smalbraak G.J. Psychological consequences of DNA-analysis for MEN type 2. Oncology. 10:1996;141-146.
40. Dudok de Wit A.C., Tibben A., Frets P.G.et al. BRCA-1 in the family; a case description of the psychological implications. Am J Med Genet. 71:1997;63-71.
41. Sujansky E., Beeler Kreutzer S., Johnson A.M., Lezotte D.C., Schrier R.W., Gabow P.A. Attitudes of at-risk and affected individuals regarding presymptomatic testing for Autosomal Dominant Polycystic Kidney Disease. Am J Med Genet. 35:1990;510-515.
42. Williamson R. Testing for Huntington's disease: early studies suggest uptake is low. BMJ. 304:1992;1585-1586.
43. Benjamin C.M., Adam S., Wiggins S.et al. Proceed with care: direct predictive testing for Huntington disease. Am J Hum Genet. 55:1994;606-617.
44. Falek A. Sequential aspects of coping and other issues in decision making in genetic counselling. In: Emery A, Pullen I, editors. Psychological aspects of genetic counselling. London: Academic Press, 1984.