To test or not to test: Interest in genetic testing for Alzheimer's disease among middle-aged adults

American Journal of Alzheimer's Disease and other Dementias

Volumn 18, Issue 1, 2003, Pages 9-20

  Cutler, Stephen J ^a   Hodgson, Lynne G ^b  

^a UNIVERSITY OF VERMONT   (United States)

^b QUINNIPIAC UNIVERSITY   (United States)

Author keywords

Comparison group; First degree relatives; Genetic testing; Mastery; Motivations; Predictors

Indexed keywords

ACCURACY; ADULT; AGE; ALZHEIMER DISEASE; ARTICLE; CONTROLLED STUDY; DEMOGRAPHY; FEMALE; FUTUROLOGY; GENETIC ANALYSIS; HEALTH EDUCATION; HEALTH INSURANCE; HUMAN; MAJOR CLINICAL STUDY; MALE; MEMORY; PERCEPTION; PREDICTION; RELATIVE;

EID: 0037279620     PISSN: 15333175     EISSN: None     Source Type: Journal    
DOI: 10.1177/153331750301800106     Document Type: Article

References (52)

1. Sobel SK, Cowan DB: Impact of genetic testing for Huntington disease on the family system. Am J Med Genet. 2000; 90: 49-59.
2. Blacker D, Tanzi RE: The genetics of Alzheimer disease. Arch Neurol. 1998; 55: 294-296.
3. Ganguli M, Chandra V, Kamboh MI, et al.: Apolipoprotein E polymorphism and Alzheimer disease. Arch Neurol. 2000; 57: 824-830.
4. Green RC, Cupples LA, Go, R, et al.: Risk of dementia among white and African American relatives of patients with Alzheimer disease. JAMA. 2002; 287: 329-336.
5. Codori A, Brandt J: Psychological costs and benefits of predictive testing for Huntington's disease. Am J Med Genet. 1994; 54: 174-184.
6. Craufurd D, Dodge A, Kerzin-Storrar L, Harris R: Uptake of presymptomatic predictive testing for Huntington's disease. The Lancet. 1989; II: 603-605.
7. Quaid KA, Brandt J, Folstein SE: The decision to be tested for Huntington's disease. JAMA. 1987; 257: 3362.
8. Wiggins S, Whyte P, Huggins M, et al.: The psychological consequences of predictive testing for Huntington's disease. N Engl J Med. 1992; 327: 1401-1405.
9. Almqvist EW, Bloch M, Brinkman R, et al: A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington disease. Am J Hum Genet. 1999; 64: 1293-1304.
10. Meiser B, Dunn S: Psychological impact of genetic testing for Huntington's disease: An update of the literature. J Neurol Neurosurg Psychiatr. 2000; 69: 574-578.
11. Chaliki H, Loader S, Levenkron JC, et al.: Women's receptivity to testing for a genetic susceptibility to breast cancer. Am J Public Health. 1995; 85: 1133-1135.
12. Lerman C, Daly M, Masny A, et al.: Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncology. 1994; 12: 843-850.
13. Struewing JP, Lerman C, Kase RG, et al.: Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families. Cancer Epidemiol Biomarkers Prev. 1995; 4: 169-173.
14. Meijers-Heijboer EJ, Verhoog LC, Brekelmans CTM, et al.: Presymptomatic DNA testing and prophylactic surgery in families with a BRCA1 or BRCA2 mutation. Lancet. 2000; 355: 2015-2020.
15. Broadstock M, Michie S, Marteau T: Psychological consequences of predictive genetic testing: A systematic review. Eur J Hum Genet. 2000; 8: 731-738.
16. Lerman C, Narod S, Schulman K, et al.: BRCA 1 testing in families with hereditary breast-ovarian cancer: A prospective study of patient decision making and outcomes. JAMA. 1996; 275: 1885-1892.
17. Green RC, Clarke VC, Thompson NJ, et al.: Early detection of Alzheimer disease: Methods, markers, and misgivings. Alzheimer Dis Assoc Disord. 1997; 11: S1-S5.
18. Long Island Alzheimer's Foundation: Gene Survey Results. LIAFLine 1996; January: 1-2.
19. Neumann PJ, Hammitt JK, Mueller C, et al.: Public attitudes about genetic testing for Alzheimer's disease. Health Affairs. 2001; 20(5):252-264.
20. Roberts JS: Anticipating response to predictive genetic testing for Alzheimer's disease: A survey of first-degree relatives. Gerontologist. 2000; 40: 43-52.
21. AGS Ethics Committee: Genetic testing for late-onset Alzheimer's disease. J Am Geriatr Soc. 2001; 49: 225-226.
22. Post SG, Whitehouse PJ, Binstock RH, et al.: The clinical introduction of genetic testing for Alzheimer disease. JAMA. 1997; 277: 832-836.
23. Steinbart EJ, Smith CO, Poorkaj P, et al.: Impact of DNA testing for early-onset familial Alzheimer disease and frontotemporal dementia. Arch Neurol. 2001; 58: 1828-1831.
24. Lerman C, Seay J, Balshem A, et al: Interest in genetic testing among first-degree relatives of breast cancer patients. Am J Med Genet. 1995; 57: 385-392.
25. Marteau TM, Croyle RT: Psychological responses to genetic testing. British Medical Journal. 1998; 316: 693-696.
26. Mastromauro C, Myers RH, Berkman, B: Attitudes toward presymptomatic testing in Huntington disease. Am J Med Genet. 1987; 26: 271-282.
27. Codori A, Hanson R, Brandt J: Self-selection in predictive testing for Huntington's disease. Am J Med Genet. 1994; 54: 167-173.
28. Quaid KA, Morris M: Reluctance to undergo predictive testing: The case of Huntington disease. Am J Med Genet. 1993; 45: 41-45.
29. Tambor ES, Bernhardt BA, Chase GA, et al.: Offering cystic fibrosis carrier screening to an HMO population: Factors associated with utilization. Am J Hum Genet. 1994; 55: 626-637.
30. Silverman JM, Li G, Zaccario ML, et al.: Patterns of risk in first-degree relatives of patients with Alzheimer's disease. Arch Gen Psychiatry. 1994; 51: 577-586.
31. Kahneman D, Tversky A: The psychology of preferences. Sci Am. 1982; 246: 160-173.
32. Cutler SJ, Hodgson LG: Anticipatory dementia: A link between memory appraisals and concerns about developing Alzheimer's disease. Gerontologist. 1996; 36: 657-664.
33. Cutler SJ, Hodgson LG: Correlates of personal concerns about developing Alzheimer's disease among middle-aged persons. Am J Alzheimer's Dis Other Demen. 2001; 16: 335-343.
34. Herrmann D: Questionnaires about memory. In: Harrie J, Morris P (eds.): Everyday Memory, Actions, and Absentmindedness. New York: Academic Press, 1984, 133-151.
35. Hodgson LG, Cutler SJ, Livingston K: Alzheimer's disease and symptom-seeking. Am J Alzheimers Dis. 1999; 14: 364-373.
36. Wexler NS: Genetic "Russian roulette": The experience of being "at risk" for Huntington's disease. In: Kessler S (ed): Genetic Counseling: Psychological Dimensions. New York: Academic Press, 1979:199-220.
37. Mirowsky J: Age, subjective life expectancy, and the sense of control: The horizon hypothesis. J Gerontol B Psychol Sci Soc Sci. 1997; 52B: S125-S134.
38. Pearlin L, Lieberman M, Menaghan E, et al: The stress process. J Health Soc Behav. 1981; 22: 337-356.
39. Singer E, Coming A, Lamias M: The polls-trends: Genetic testing, engineering, and therapy. Public Opinion Quarterly. 1998; 62: 633-664.
40. Hodgson LG, Cutler SJ: Anticipatory dementia and well-being. Am J Alzheimers Dis. 1997; 12: 62-66.
41. Verhaeghen P, Geraerts N, Marcoen A: Memory complaints, coping, and well-being in old age: A systemic approach. Gerontologist. 2000; 40: 540-548.
42. Codori A, Slavney PR, Young C, et al: Predictors of psychological adjustment to genetic testing for Huntington's disease. Health Psychology. 1997; 16: 36-50.
43. Miller SM, Mangan CE: Interacting effects of information and coping style in adapting to gynecologic stress: Should the doctor tell all? J Personality Soc Psychol. 1983; 45: 223-236.
44. Wallace KA, Bergeman CS: Control and the elderly: "Goodness-of-fit." Int J Aging Hum Dev. 1997; 45: 323-339.
45. Chipperfield JG, Greenslade L: Perceived control as a buffer in the use of health care services. J Gerontol B Psychol Sci Soc Sci. 1999; 54B: P146-P154.
46. Coon DW, Davies H, McKibben C, et al: The psychological impact of genetic testing for Alzheimer disease. Genet Test. 1999; 3: 121-131.
47. Murphy DJ, Gahm GJ, Santilli S, et al. Seniors' preferences for cancer screening and medication use based on absolute risk reduction. J Gerontol A Biol Sci Med Sci. 2002; 57A: M100-M105.
48. Aranda MP: Racial and ethnic factors in dementia care-giving research in the US. Aging & Mental Health. 2001; 5: S116-S123.
49. Connell CM, Shaw BA, Holmes SB, et al: Caregivers' attitudes toward their family members' participation in Alzheimer disease research: Implications for recruitment and retention. Alzheimer Dis Assoc Disord. 2001; 15: 137-145.
50. Roberts JS, Connell CM: Illness representations among first-degree relatives of people with Alzheimer disease. Alzheimer Dis Associated Disord. 2000; 14: 129-136.
51. Tarlow BA, Mahoney DF: The cost of recruiting Alzheimer's disease caregivers for research. J Aging & Health. 2000; 12: 490-510.
52. Quaid KA: Implications of genetic susceptibility testing with apolipoprotein E. In: Post S, Whitehouse P (eds.): Genetic Testingfor Alzheimer Disease: Ethical and Clinical Issues. Baltimore: Johns Hopkins University Press, 1998, 118-139.