Abstract
Based on a hypothetical scenario positing 100 percent accuracy in test results, we examined interest in genetic testing for Alzheimer's disease (AD) among adult children, 40-60 years of age, who have a living parent with a diagnosis of probable AD (N = 108), and a matched comparison group of persons with no parental history of AD (N = 150). For both groups, planning for the future was the most important reason cited for being tested; lack of good treatment options and concerns about losing health insurance were the most important reasons for not being tested. Hierarchical regression was used to examine the effects of sociodemographic characteristics, subjective perceptions of memory functioning, concerns about having and developing AD, and mastery on interest in being tested. Personal concerns about developing AD and mastery emerged as significant predictors and subsample membership approached significance, although the full model explained just 18 percent of the variance. Because persons in the comparison group were more likely to report an interest in being tested, educational efforts about genetic testing should not be restricted only to family members of persons with a diagnosis of AD.
Keywords: Genetic testing, first-degree relatives, comparison group, motivations, predictors, mastery
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Contributor Information
Stephen J. Cutler, Department of Sociology, University of Vermont, Burlington, Vermont.
Lynne G. Hodgson, Department of Sociology, Quinnipiac University, Hamden, Connecticut.
References
- Sobel SK, Cowan DB: Impact of genetic testing for Huntington disease on the family system. Am J Med Genet. 2000; 90: 49-59. [DOI] [PubMed] [Google Scholar]
- Blacker D, Tanzi RE: The genetics of Alzheimer disease. Arch Neurol. 1998; 55: 294-296. [DOI] [PubMed] [Google Scholar]
- Ganguli M, Chandra V, Kamboh MI, et al.: Apolipoprotein E polymorphism and Alzheimer disease. Arch Neurol. 2000; 57: 824-830. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- Codori A, Brandt J: Psychological costs and benefits of predictive testing for Huntington's disease. Am J Med Genet. 1994; 54: 174-184. [DOI] [PubMed] [Google Scholar]
- Craufurd D, Dodge A, Kerzin-Storrar L, Harris R: Uptake of presymptomatic predictive testing for Huntington's disease. The Lancet. 1989; II: 603-605. [DOI] [PubMed] [Google Scholar]
- Quaid KA, Brandt J, Folstein SE: The decision to be tested for Huntington's disease. JAMA. 1987; 257: 3362-3362. [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 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. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 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. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Lerman C, Daly M, Masny A, et al.: Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncology. 1994; 12: 843-850. [DOI] [PubMed] [Google Scholar]
- 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. [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- Broadstock M, Michie S, Marteau T: Psychological consequences of predictive genetic testing: A systematic review. Eur J Hum Genet. 2000; 8: 731-738. [DOI] [PubMed] [Google Scholar]
- Lerman C, Narod S, Schulman K, et al.: BRCA1 testing in families with hereditary breast-ovarian cancer: A prospective study of patient decision making and outcomes. JAMA. 1996; 275: 1885-1892. [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- Long Island Alzheimer's Foundation: Gene Survey Results. LIAF Line 1996; January: 1-2. [Google Scholar]
- Neumann PJ, Hammitt JK, Mueller C, et al.: Public attitudes about genetic testing for Alzheimer's disease. Health Affairs. 2001; 20(5): 252-264. [DOI] [PubMed] [Google Scholar]
- Roberts JS: Anticipating response to predictive genetic testing for Alzheimer's disease: A survey of first-degree relatives. Gerontologist. 2000; 40: 43-52. [DOI] [PubMed] [Google Scholar]
- AGS Ethics Committee: Genetic testing for late-onset Alzheimer's disease. J Am Geriatr Soc. 2001; 49: 225-226. [DOI] [PubMed] [Google Scholar]
- Post SG, Whitehouse PJ, Binstock RH, et al.: The clinical introduction of genetic testing for Alzheimer disease. JAMA. 1997; 277: 832-836. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- Marteau TM, Croyle RT: Psychological responses to genetic testing. British Medical Journal. 1998; 316: 693-696. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Mastromauro C, Myers RH, Berkman, B: Attitudes toward presymptomatic testing in Huntington disease. Am J Med Genet. 1987; 26: 271-282. [DOI] [PubMed] [Google Scholar]
- Codori A, Hanson R, Brandt J: Self-selection in predictive testing for Huntington's disease. Am J Med Genet. 1994; 54: 167-173. [DOI] [PubMed] [Google Scholar]
- Quaid KA, Morris M: Reluctance to undergo predictive testing: The case of Huntington disease. Am J Med Genet. 1993; 45: 41-45. [DOI] [PubMed] [Google Scholar]
- 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. [PMC free article] [PubMed] [Google Scholar]
- Silverman JM, Li G, Zaccario ML, et al.: Patterns of risk in firstdegree relatives of patients with Alzheimer's disease. Arch Gen Psychiatry. 1994; 51: 577-586. [DOI] [PubMed] [Google Scholar]
- Kahneman D, Tversky A: The psychology of preferences. Sci Am. 1982; 246: 160-173. [Google Scholar]
- Cutler SJ, Hodgson LG: Anticipatory dementia: A link between memory appraisals and concerns about developing Alzheimer's disease. Gerontologist. 1996; 36: 657-664. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Herrmann D: Questionnaires about memory. In: Harrie J, Morris P (eds.): Everyday Memory, Actions, and Absentmindedness. New York: Academic Press, 1984, 133-151. [Google Scholar]
- Hodgson LG, Cutler SJ, Livingston K: Alzheimer's disease and symptom-seeking. Am J Alzheimers Dis. 1999; 14: 364-373. [Google Scholar]
- 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. [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- Pearlin L, Lieberman M, Menaghan E, et al: The stress process. J Health Soc Behav. 1981; 22: 337-356. [PubMed] [Google Scholar]
- Singer E, Corning A, Lamias M: The polls-trends: Genetic testing, engineering, and therapy. Public Opinion Quarterly. 1998; 62: 633-664. [Google Scholar]
- Hodgson LG, Cutler SJ: Anticipatory dementia and well-being. Am J Alzheimers Dis. 1997; 12: 62-66. [Google Scholar]
- Verhaeghen P, Geraerts N, Marcoen A: Memory complaints, coping, and well-being in old age: A systemic approach. Gerontologist. 2000; 40: 540-548. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- Wallace KA, Bergeman CS: Control and the elderly: “Goodnessoffie”. Int J Aging Hum Dev. 1997; 45: 323-339. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- Coon DW, Davies H, McKibben C, et al: The psychological impact of genetic testing for Alzheimer disease. Genet Test. 1999; 3: 121-131. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- Aranda MP: Racial and ethnic factors in dementia care-giving research in the US. Aging & Mental Health. 2001; 5: S116-S123. [DOI] [PubMed] [Google Scholar]
- 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. [DOI] [PubMed] [Google Scholar]
- Roberts JS, Connell CM: Illness representations among firstdegree relatives of people with Alzheimer disease. Alzheimer Dis Associated Disord. 2000; 14: 129-136. [DOI] [PubMed] [Google Scholar]
- Tarlow BA, Mahoney DF: The cost of recruiting Alzheimer's disease caregivers for research. J Aging & Health. 2000; 12: 490-510. [DOI] [PubMed] [Google Scholar]
- Quaid KA: Implications of genetic susceptibility testing with apolipoprotein E. In: Post S, Whitehouse P (eds.): Genetic Testing for Alzheimer Disease: Ethical and Clinical Issues. Baltimore: Johns Hopkins University Press, 1998, 118-139. [Google Scholar]