Genetic testing for Alzheimer's disease and its impact on insurance purchasing behavior

Health Affairs

Volumn 24, Issue 2, 2005, Pages 483-490

  Zick, Cathleen D ^a   Mathews, Charles J ^b   Roberts, J Scott ^c   Cook Deegan, Robert ^d   Pokorski, Robert J ^e   Green, Robert C ^f,g  

^a UNIVERSITY OF UTAH   (United States)

^b Boston Healthcare Associates   (United States)

^c BOSTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

^d DUKE UNIVERSITY   (United States)

^e Nebraska Furniture Mart (A Berkshire Hathaway Company)   (United States)

^f REVEAL Study Group

^g BOSTON UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

APOLIPOPROTEIN E;

ADULT; ALZHEIMER DISEASE; ARTICLE; CLINICAL TRIAL; COGNITION; CONTROLLED CLINICAL TRIAL; CONTROLLED STUDY; DISABILITY; DISEASE CLASSIFICATION; DISEASE PREDISPOSITION; FEMALE; GENETIC ANALYSIS; GENETIC SCREENING; GENETIC SUSCEPTIBILITY; GENOTYPE; HEALTH INSURANCE; HUMAN; INTERPERSONAL COMMUNICATION; LONG TERM CARE; MAJOR CLINICAL STUDY; MALE; MARKET; OUTCOMES RESEARCH; PATIENT ATTITUDE; PROFESSIONAL SECRECY; PURCHASING; RANDOMIZED CONTROLLED TRIAL; RISK ASSESSMENT;

EMPIRICAL APPROACH; GENETICS AND REPRODUCTION;

ALZHEIMER DISEASE; APOLIPOPROTEINS E; CONFIDENTIALITY; FEMALE; GENETIC SCREENING; HUMANS; INSURANCE, LONG-TERM CARE; MALE; MIDDLE AGED; RISK ASSESSMENT; UNITED STATES;

EID: 17244378936     PISSN: 02782715     EISSN: None     Source Type: Journal    
DOI: 10.1377/hlthaff.24.2.483     Document Type: Article

References (39)

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2. R.J. Pokorski, "Insurance Underwriting in the Genetic Era," American Journal of Human Genetics 60, no. 1 (1997): 205-216.
3. P.R. Billings, "Discrimination as a Consequence of Genetic Testing," American Journal of Human Genetics 50, no. 3 (1992): 476-482.
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6. For details, see the Library of Congress Web site, thomas.loc.gov.
7. House Committee on Education and the Workforce, "Hearings by Subcommittee on EmployerEmployee Relations: 108th Congress," edworkforce.house.gov/hearings/108th/eer/eerhearings.htm (14 December 2004).
8. See National Conference of State Legislatures, "Genetics and Health Insurance: State Anti-Discrimination Laws," www.ncsl.org/programs/health/ genetics/ndishlth.htm (14 December 2004); and "Genetics and Life, Disability, and Long-Term Care Insurance," October 2003, www.ncsl.org/programs/health/genetics/ndislife.htm (14 December 2004).
9. See National Conference of State Legislatures, "Genetics and Health Insurance: State Anti-Discrimination Laws," www.ncsl.org/programs/health/ genetics/ndishlth.htm (14 December 2004); and "Genetics and Life, Disability, and Long-Term Care Insurance," October 2003, www.ncsl.org/programs/health/genetics/ndislife.htm (14 December 2004).
10. E.V. Lapham, C. Kozma, and J.O. Weiss, "Genetic Discrimination: Perspectives of Consumers," Science 274, no. 5287 (1996): 621-624; E.J. Steinbart et al., "Impact of DNA Testing for Early-Onset Familial Alzheimer Disease and Frontotemporal Dementia," Archives of Neurology 58, no. 11 (2001): 1828-1831; and K.J. Wingrove et al., "Experiences and Attitudes Concerning Genetic Testing and Insurance in a Colorado Population: A Survey of Families Diagnosed with Fragile X Syndrome," American Journal of Medical Genetics 64, no. 2 (1996): 378-381.
11. E.V. Lapham, C. Kozma, and J.O. Weiss, "Genetic Discrimination: Perspectives of Consumers," Science 274, no. 5287 (1996): 621-624; E.J. Steinbart et al., "Impact of DNA Testing for Early-Onset Familial Alzheimer Disease and Frontotemporal Dementia," Archives of Neurology 58, no. 11 (2001): 1828-1831; and K.J. Wingrove et al., "Experiences and Attitudes Concerning Genetic Testing and Insurance in a Colorado Population: A Survey of Families Diagnosed with Fragile X Syndrome," American Journal of Medical Genetics 64, no. 2 (1996): 378-381.
12. E.V. Lapham, C. Kozma, and J.O. Weiss, "Genetic Discrimination: Perspectives of Consumers," Science 274, no. 5287 (1996): 621-624; E.J. Steinbart et al., "Impact of DNA Testing for Early-Onset Familial Alzheimer Disease and Frontotemporal Dementia," Archives of Neurology 58, no. 11 (2001): 1828-1831; and K.J. Wingrove et al., "Experiences and Attitudes Concerning Genetic Testing and Insurance in a Colorado Population: A Survey of Families Diagnosed with Fragile X Syndrome," American Journal of Medical Genetics 64, no. 2 (1996): 378-381.
13. K. Armstrong et al., "Life Insurance and Breast Cancer Risk Assessment: Adverse Selection, Genetic Testing Decisions, and Discrimination," American Journal of Medical Genetics Part A 120, no. 3 (2003): 359-364; and C.D. Zick et al., "Genetic Testing, Adverse Selection, and the Demand for life Insurance," American Journal of Medical Genetics 93, no. 1 (2000): 29-39.
14. K. Armstrong et al., "Life Insurance and Breast Cancer Risk Assessment: Adverse Selection, Genetic Testing Decisions, and Discrimination," American Journal of Medical Genetics Part A 120, no. 3 (2003): 359-364; and C.D. Zick et al., "Genetic Testing, Adverse Selection, and the Demand for life Insurance," American Journal of Medical Genetics 93, no. 1 (2000): 29-39.
15. R.C. Green, Diagnosis and Management of Alsheimer's Disease and Other Dementias, 2d ed. (Caddo, Okla.: Professional Communications Inc., 2005).
16. L.E. Hebert et al., "Alzheimer Disease in the U.S. Population: Prevalence Estimates using the 2000 Census," Archives of Neurology 60, no. 8 (2003): 1119-1122.
17. A.D. Roses, "Apoliopoprotein E Affects the Rate of Alzheimer Disease Expression: Beta-Amyloid Burden Is a Secondary Consequence Dependant on APOE Genotype and Duration of Disease," Journal of Neuropathology and Experimental Neurology 53, no. 5 (1994): 429-437; and L.A. Farrer et al., "Effects of Age, Sex, and Ethnicity on the Association between Apolipoprotein E Genotype and Alzheimer Disease: A Meta-Analysis," Journal of the American Medical Association 278, no. 16 (1997): 1349-1356.
18. A.D. Roses, "Apoliopoprotein E Affects the Rate of Alzheimer Disease Expression: Beta-Amyloid Burden Is a Secondary Consequence Dependant on APOE Genotype and Duration of Disease," Journal of Neuropathology and Experimental Neurology 53, no. 5 (1994): 429-437; and L.A. Farrer et al., "Effects of Age, Sex, and Ethnicity on the Association between Apolipoprotein E Genotype and Alzheimer Disease: A Meta-Analysis," Journal of the American Medical Association 278, no. 16 (1997): 1349-1356.
19. R.C. Green, "Risk Assessment for Alzheimer's Disease with Genetic Susceptibility Testing: Has the Moment Arrived?" Alzheimer's Care Quarterly 3, no. 3 (2002): 208-214; J.S. Roberts et al., "Reasons for Seeking Genetic Susceptibility Testing among First-Degree Relatives of People with Alzheimer Disease," Alzheimer Disease and Associated Disorders 17, no. 2 (2003): 86-93; and J.S. Roberts et al., "Who Seeks Genetic Susceptibility Testing for Alzheimer's Disease? Findings from a Multisite, Randomized Clinical Trial," Genetics in Medicine 6, no. 4 (2004): 197-203.
20. R.C. Green, "Risk Assessment for Alzheimer's Disease with Genetic Susceptibility Testing: Has the Moment Arrived?" Alzheimer's Care Quarterly 3, no. 3 (2002): 208-214; J.S. Roberts et al., "Reasons for Seeking Genetic Susceptibility Testing among First-Degree Relatives of People with Alzheimer Disease," Alzheimer Disease and Associated Disorders 17, no. 2 (2003): 86-93; and J.S. Roberts et al., "Who Seeks Genetic Susceptibility Testing for Alzheimer's Disease? Findings from a Multisite, Randomized Clinical Trial," Genetics in Medicine 6, no. 4 (2004): 197-203.
21. R.C. Green, "Risk Assessment for Alzheimer's Disease with Genetic Susceptibility Testing: Has the Moment Arrived?" Alzheimer's Care Quarterly 3, no. 3 (2002): 208-214; J.S. Roberts et al., "Reasons for Seeking Genetic Susceptibility Testing among First-Degree Relatives of People with Alzheimer Disease," Alzheimer Disease and Associated Disorders 17, no. 2 (2003): 86-93; and J.S. Roberts et al., "Who Seeks Genetic Susceptibility Testing for Alzheimer's Disease? Findings from a Multisite, Randomized Clinical Trial," Genetics in Medicine 6, no. 4 (2004): 197-203.
22. Initially, 179 people were self-referred to the study through the media and memory clinics. Another 169 were contacted through an Alzheimer's research registry, for a total of 348. Of these 348, 206 attended a prestudy Alzheimer's education session. Of the 206, 162 agreed to participate in the blood draw and counseling session and followed through with the study.
23. See Farrer et al., "Effects of Age, Sex, and Ethnicity"; R.C. Green et al., "Risk of Dementia among White and African American Relatives of Patients with Alzheimer Disease," Journal of the American Medical Association 287, no. 3 (2002): 329-336; and L.A. Cupples et al., "Estimating Risk Curves for First-Degree Relatives of Patients with Alzheimer's Disease: The REVEAL Study," Genetics in Medicine 6, no. 4 (2004): 192-196.
24. See Farrer et al., "Effects of Age, Sex, and Ethnicity"; R.C. Green et al., "Risk of Dementia among White and African American Relatives of Patients with Alzheimer Disease," Journal of the American Medical Association 287, no. 3 (2002): 329-336; and L.A. Cupples et al., "Estimating Risk Curves for First-Degree Relatives of Patients with Alzheimer's Disease: The REVEAL Study," Genetics in Medicine 6, no. 4 (2004): 192-196.
25. See Farrer et al., "Effects of Age, Sex, and Ethnicity"; R.C. Green et al., "Risk of Dementia among White and African American Relatives of Patients with Alzheimer Disease," Journal of the American Medical Association 287, no. 3 (2002): 329-336; and L.A. Cupples et al., "Estimating Risk Curves for First-Degree Relatives of Patients with Alzheimer's Disease: The REVEAL Study," Genetics in Medicine 6, no. 4 (2004): 192-196.
26. Having two ε4 alleles raises the risk of developing AD more than having one ε4 allele. There were only three people in the ε4 positive group who had two ε4 alleles. Their small numbers precluded undertaking analyses comparing the insurance behavior of those having two ε4 alleles with that of other study participants.
27. Nationally, only 7 percent of people age sixty-five and older carry long-term care insurance. M. Niefield et al., "Long-Term Care: Medicaid's Role and Challenges" (Washington: Kaiser Commission on Medicaid and the Uninsured, November 1999). The fact that our respondents' initial holdings were almost three times the national average reinforces our contention that the sample is not representative of the general population.
28. This certificate allows "the investigator and others who have access to research records to refuse to disclose identifying information on research participants in any civil, criminal, administrative, legislative, or other proceeding whether at the federal or state or local level." National Institutes of Health Office of Extramural Research, "Certificates of Confidentiality Kiosk," grants1.nih.gov/grants/policy/coc/index.htm (14 December 2004).
29. People were included in the analysis if they responded to any of the insurance change questions and if they did not have missing data on any of the covariates. If a person's insurance responses were missing at either the six-month or one-year interview, his/her response from the preceding interview was used to measure insurance change.
30. A logit estimating routine is used because of the qualitative nature of the dependent variable (that is, 1 = yes, 0 = no). See W.H. Greene, Econometric Analysis (New York: Macmillan, 1993).
31. Using bootstrap estimation with 10,000 replications, we obtained an odds ratio estimate associated with testing positive for the ε4 allele of 1.75. The bias-corrected (BC) 95 percent confidence interval estimation for this estimate was -1.42 to 19.8. Since this interval includes zero, we must be cautious in our interpretation of the logit regression results.
32. Health insurance is typically obtained through an employer with no underwriting, and disability insurance would typically play a very small role in providing coverage for a late-onset progressive disease such as Alzheimer's. The need for additional life insurance also would likely be minimal, given that in most instances, children would have been raised and the mortgage would have been paid off by the time this late-onset disease struck. In contrast, long-term care insurance is designed specifically to protect financial assets and to minimize caregiving burdens of close family members late in one's life. For all of these reasons, those in our sample who had the ε4 allele of the APOE gene are not likely to see any economic need to alter health, disability, or life insurance coverage.
33. A careful review of the open-ended responses to the insurance questions found no instances where participants who were ε4-negative decreased their insurance coverage during the year.
34. Because a genetic test result is permanent, it is quite possible that these percentages would increase over time. In particular, people who learned their genetic test results at a relatively young age (before age fifty) may believe that they need not change their long-term care insurance holdings in the short term.
35. The potential may also vary by the genetic test in question, although we could not investigate this.
36. See, for example, H. Brodaty et al., "Consensus Statement on Predictive Testing for Alzheimer Disease," Alzheimer Disease and Associated Disorders 9, no. 4 (1995): 182-187; L.A. Farrer et al., "Statement on Use of Apolipoprotein E Testing for Alzheimer Disease," Journal of the American Medical Association 274, no. 20 (1995): 1627-1629; and L.M. McConnell et al., "Genetic Testing and Alzheimer Disease: Has the Time Come?" Nature Medicine 4, no. 7 (1998): 757-759.
37. See, for example, H. Brodaty et al., "Consensus Statement on Predictive Testing for Alzheimer Disease," Alzheimer Disease and Associated Disorders 9, no. 4 (1995): 182-187; L.A. Farrer et al., "Statement on Use of Apolipoprotein E Testing for Alzheimer Disease," Journal of the American Medical Association 274, no. 20 (1995): 1627-1629; and L.M. McConnell et al., "Genetic Testing and Alzheimer Disease: Has the Time Come?" Nature Medicine 4, no. 7 (1998): 757-759.
38. See, for example, H. Brodaty et al., "Consensus Statement on Predictive Testing for Alzheimer Disease," Alzheimer Disease and Associated Disorders 9, no. 4 (1995): 182-187; L.A. Farrer et al., "Statement on Use of Apolipoprotein E Testing for Alzheimer Disease," Journal of the American Medical Association 274, no. 20 (1995): 1627-1629; and L.M. McConnell et al., "Genetic Testing and Alzheimer Disease: Has the Time Come?" Nature Medicine 4, no. 7 (1998): 757-759.
39. Society of Actuaries, Long Term Care Experience Committee Intercompany Study, 1984-1999 (Schaumberg, Ill.: SOA, September 2002).