The clinical introduction of genetic testing for Alzheimer disease: An ethical perspective

JAMA

Volumn 277, Issue 10, 1997, Pages 832-836

  Post, Stephen G ^a   Whitehouse, Peter J ^c,q   Binstock, Robert H ^a   Bird, Thomas D ^d   Eckert, Sharen K ^e   Farrer, Lindsay A ^f   Fleck, Leonard M ^g   Gaines, Atwood D ^b   Juengst, Eric T ^a   Karlinsky, Harry ^h   Miles, Steven ⁱ   Murray, Thomas H ^a   Quaid, Kimberly A ^l   Relkin, Norman R ^m   Roses, Allen D ^n,r   St George Hyslop, P H ^o   Sachs, Greg A ^p   Steinbock, Bonnie ^j   Truschke, Edward F ^k   Zinn, Arthur B ^a  

^a CASE WESTERN RESERVE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b CASE WESTERN RESERVE UNIVERSITY   (United States)

^c Alzheimer Ctr Univ Hospitals C

^d VETERANS AFFAIRS MEDICAL CENTER   (United States)

^e Alzheimer's Dis Related Disord A   (United States)

^f BOSTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

^g MICHIGAN STATE UNIVERSITY   (United States)

^h RIVERVIEW HOSPITAL   (Canada)

ⁱ UNIVERSITY OF MINNESOTA   (United States)

^j STATE UNIVERSITY OF NEW YORK   (United States)

^k ALZHEIMER'S ASSOCIATION   (United States)

^l INDIANA UNIVERSITY MEDICAL CENTER   (United States)

^m WEILL CORNELL MEDICAL CENTER   (United States)

ⁿ DUKE UNIVERSITY MEDICAL CENTER   (United States)

^o UNIVERSITY OF TORONTO   (Canada)

^p UNIVERSITY OF CHICAGO MEDICAL CENTER   (United States)

^q PFIZER INC   (United States)

^r Athena Neurosci and Glaxo Wellcome   (Greece)

more..

Author keywords

[No Author keywords available]

Indexed keywords

APOLIPOPROTEIN E;

ALZHEIMER DISEASE; ARTICLE; AUTOSOMAL DOMINANT INHERITANCE; CHROMOSOME 1; CHROMOSOME 14; CHROMOSOME 19; CHROMOSOME 21; GENETIC ANALYSIS; GENETIC LINKAGE; GENETIC SUSCEPTIBILITY; HEALTH CARE POLICY; MEDICAL ETHICS; PATIENT COUNSELING; PRIORITY JOURNAL;

EID: 0001547777     PISSN: 00987484     EISSN: None     Source Type: Journal    
DOI: 10.1001/jama.277.10.832     Document Type: Article

References (75)

1. Evans D, Scheer PA, Cook NR, et al. Estimated prevalence of Alzheimer's disease in the United States. Milbank Q. 1990;68:267-289.
2. Lautenschlager NT, Cupples LA, Rao VS, et al. Risk of dementia among relatives of Alzheimer's disease patients in the MIRAGE study. Neurology. 1996;46:641-650.
3. Breitner JCS. Clinical genetics and genetic counseling in Alzheimer disease. Ann Intern Med. 1991; 115:601-606.
4. Roses AD. Apolipoprotein E alleles as risk factors in Alzheimer's disease. Annu Rev Med. 1996; 47:387-400.
5. Strittmatter WJ, Saunders AM, Schmechel D, et al. Apolipoprotein E: high-avidity binding to beta-amyloid and increased frequency of type 4 allele in late-onset familial Alzheimer disease. Proc Natl Acad Sci U S A. 1993;90:1977-1981.
6. Levy-Lahad E, Lahad A, Wijsman EM, et al. Apolipoprotein E genotypes and age of onset in early-onset familial Alzheimer's disease. Ann Neurol. 1995;38:678-680.
7. Goldgaber D, Lerman MI, McBride OW, et al. Characterization and chromosomal locations of a cDNA encoding brain amyloid of Alzheimer's disease. Science. 1987;235:877-880.
8. Rang J, Lemaire HG, Unterbeck A, et al. The precursor of Alzheimer disease amyloid A4 protein resembles a cell surface receptor. Nature. 1987; 325:733-736.
9. Goate AM, Chartier-Harlin MC, Mullan M, et al. Early-onset Alzheimer's disease caused by mutations at codon 717 of the β-amyloid precursor protein gene. Nature. 1991;349:704-706.
10. Chartier-Harlin MC, Crawford F, Houlden H, et al. Early-onset Alzheimer's disease caused by mutations at codon 717 of the β-amyloid precursor protein gene. Nature. 1991;353:844-846.
11. Schellenberg GD, Bird TD, Wijsman EM, et al. Genetic linkage evidence for a familial Alzheimer's disease locus on chromosome 14. Science. 1992;258: 668-671.
12. St George-Hyslop PH, Haines E, Rogaev EI, et al. Genetic evidence for a novel familial Alzheimer disease gene on chromosome 14. Nat Genet. 1992; 2:330-334.
13. Van Broeckhoven C. Presenilins and Alzheimer disease. Nat Genet. 1995;11:230-232.
14. Sherrington R, Rogaev EI, Liang Y, et al. Cloning of a gene bearing missense mutations in early-onset familial Alzheimer's disease. Nature. 1995; 375:754-760.
15. Perez-Tur J, Froelich S, Prihar G, et al. A mutation in Alzheimer's disease destroying a splice acceptor site in the presenilin-1 gene. Neuroreport. 1995;7:297-301.
16. Hutton M, Busfield F, Wragg M, et al. Complete analysis of the presenilin 1 gene in early onset Alzheimer's disease. Neuroreport. 1996;7:801-805.
17. Barinaga M. New Alzheimer's gene found. Science. 1995;268:1845-1846.
18. Levy-Lahad E, Wasco W, Poorkaj P, et al. Candidate gene for the chromosome 1 familial Alzheimer's disease locus. Science. 1995;269:973-977.
19. Levy-Lahad E, Wijsman EM, Nemens E, et al. A familial Alzheimer's disease locus on chromosome 1. Science. 1995;269:970-973.
20. Rogaev EI, Sherrington R, Rogaev EA, et al. Familial Alzheimer's disease kindreds with missense mutations in a gene on chromosome 1 related to the Alzheimer's disease type 3 gene. Nature. 1995;376:775-778.
21. Lampe TH, Bird TD, Nochlin D. Phenotype of chromosome 14-linked familial Alzheimer's disease in a large kindred. Ann Neurol. 1994;36:368-378.
22. Bird TD, Levy-Lahad E, Poorkaj P, et al. Wide range in age of onset for chromosome 1 type familial Alzheimer disease. Ann Neurol. 1996;40:932-936.
23. Sherrington R, Froelich S, Sorbi S, et al. Alzheimer's disease associated with mutations in presenilin 2 is rare and variably penetrant. Hum Mol Genet. 1996;5:985-988.
24. Saunders AM, Strittmatter WJ, Schmechel D, et al. Association of apolipoprotein E allele ∈4 with late-onset familial and sporadic Alzheimer's disease. Neurology. 1993;43:1467-1472.
25. Roses AD. Apolipoprotein E affects the rate of Alzheimer disease expression. J Neuropathol Exp Neurol. 1994;53:429-437.
26. Corder EH, Saunders AM, Strittmatter WJ, et al. Gene dose of apolipoprotein E type 4 allele and the risk of Alzheimer's disease in late onset families. Science. 1993;261:921-923.
27. Farrer LA, Brin MF, Elsas L, et al. Statement on use of apolipoprotein E testing for Alzheimer disease. JAMA. 1995;274:1627-1629.
28. Seshadri S, Drachman DA, Lippa CF. Apolipoprotein E ∈4 allele and the lifetime risk of Alzheimer's disease. Arch Neurol. 1995;52:1074-1079.
29. Breitner JSC. APOE genotyping and Alzheimer's disease. Lancet. 1996;347:1184-1185.
30. Myers RH, Schaefer EJ, Wilson PWF, et al. Apolipoprotein E ∈4 association with dementia in a population-based study: the Framingham Study. Neurology. 1996;46:673-677.
31. Farrer LA, Cupples LA, van Duijn CM, et al. Apolipoprotein E genotype in patients with Alzheimer's disease. Ann Neurol. 1995;38:797-808.
32. Van Duijn CM, Clayton DG, Chandra V, et al. Interaction between genetic and environmental risk factors for Alzheimer's disease: a reanalysis of case-control studies. Genet Epidemiol. 1994;11:539-551.
33. Small GW, Mazziotta JC, Collins MT, et al. Apolipoprotein E type 4 allele and cerebral glucose metabolism in relatives at risk for familial Alzheimer disease. JAMA. 1995;273:942-947.
34. Reiman EM, Caselli RJ, Yun LS, et al. Preclinical evidence of Alzheimer's disease in persons homozygous for epsilon 4 allele for apolipoprotein E. N Engl J Med. 1996;334:752-758.
35. Birge SJ. Is there a role for estrogen replacement therapy in the prevention and treatment of dementia? J Am Geriatr Soc. 1996;44:865-870.
36. Lovestone S, with UK Alzheimer's Disease Genetics Consortium. The genetics of Alzheimer's disease. Int J Geriatr Psychiatry. 1995;10:1-7.
37. Medical and Scientific Advisory Committee of Alzheimer's Disease International.Consensus statement on predictive testing for Alzheimer disease. Alzheimer Dis Assoc Disorders. 1995;9:182-187.
38. Relkin NR, National Institute on Aging/Alzheimer's Association Working Group. Apolipoprotein E genotyping in Alzheimer's disease. Lancet. 1996;347:1091-1095.
39. Alzheimer's Disease and Associated Disorders Inc. Caution urged with Alzheimer gene testing. News release, 1995.
40. Karlinsky H, Sadovnick AD, Burgess MM, et al. Issues in molecular genetic testing of individuals with suspected early-onset familial Alzheimer's disease. Alzheimer Dis Assoc Disorders. 1994;8:116-125.
41. Bird TD, Bennett RL. Why do DNA testing? practical and ethical implications of new neurogenetic tests. Ann Neurol. 1995;38:141-146.
42. Quaid KA. Presymptomatic testing for Huntington disease. J Genet Counseling. 1992;1:277-302.
43. Lennox A, Karlinsky H, Meschino W, et al. Molecular genetic predictive testing for Alzheimer's disease. Alzheimer Dis Assoc Disorders. 1994;8: 126-147.
44. Mayeux R, Stern Y, Ottman R, et al. The apolipoprotein ∈3 allele in patients with Alzheimer's disease. Ann Neurol. 1993;34:752-754.
45. Poirier J, Delisle M-C, Quirion R, et al. Apolipoprotein ∈4 allele as a predictor of cholinergic deficits and treatment outcome in Alzheimer disease. Proc Natl Acad Sci U S A. 1995;92:12260-12264.
46. Morris JC. Differential diagnosis of Alzheimer's disease. In: Friedland RP, ed. Clinics in Geriatric Medicine: Alzheimer's Disease Update. Philadelphia, Pa: WB Saunders; 1994:257-276.
47. Roses AD. Apolipoprotein E genotyping in the differential diagnosis, not prediction, of Alzheimer's disease. Ann Neurol. 1995;38:6-14.
48. Bird TD. Apolipoprotein E genotyping in the diagnosis of Alzheimer's disease: a cautionary view. Ann Neurol. 1995;38:2-4.
49. Geldmacher DS, Whitehouse PJ. Evaluation of dementia. N Engl J Med. 1996;335:330-336.
50. Saunders AM, Hulette C, Welsh KA, et al. Specificity, sensitivity and predictive value of apolipoprotein E genotyping in a consecutive autopsy series of sporadic Alzheimer disease patients. Lancet. 1996;348:90-93.
51. Roses AD. The predictive value of APOE genotyping in the early diagnosis of dementia of the Alzheimer type. Presented at the Fifth International Conference on Alzheimer's Disease and Related Disorders; Osaka, Japan; July 1996.
52. Kakulas BA, Wilton SD, Fabian VA, et al. Apolipoprotein E genotyping in the diagnosis of Alzheimer's disease in an autopsy confirmed series. Lancet. 1996;348:483.
53. Roses AD, Sanders AM. Evaluation of suspected dementia. N Engl J Med. 1996;335:1996.
54. Whitehouse PJ, Geldmacher DS. Evaluation of suspected dementia. N Engl J Med. 1996;335:1997-1998.
55. Buchanan AE, Brock DW. Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge, England: Cambridge University Press; 1990.
56. Council on Scientific Affairs and Council on Ethical and Judicial Affairs. Conflicts of interest in medical center/industry research relationships. JAMA. 1990;263:2790-2794.
57. Mayeaux R, Schupf N. Apolipoprotein E and Alzheimer's disease: the implications of progress in molecular medicine. Am J Public Health. 1995;85: 1280-1284.
58. Blumenthal D. Academic-industry relationships in the life sciences. JAMA. 1992;268:3344-3349.
59. Butler RN. ApoE: new risk factor for Alzheimer's. Geriatrics. 1994;49:10-11.
60. Nelkin D. Promotional metaphors and their popular appeal. Public Understanding Sci. 1994;3:25-31.
61. 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.
62. Huggins M, Bloch M, Kanani S, et al. Ethical and legal dilemmas arising during predictive testing for adult-onset disease: the experience of Huntington disease. Am J Hum Genet. 1990;47:4-12.
63. Lannfelt L, Axelman K, Lilius L, et al. Genetic counseling of a Swedish Alzheimer family with amyloid precursor protein mutation. Am J Hum Genet. 1995;56:332-335.
64. Gostin L, Turek-Brezina J, Powers M. Privacy and security of personal information in a new health care system. JAMA. 1993;270:2487-2493.
65. Wiener JM, Illston LH, Hanley RJ. Sharing the Burden: Strategies for Public and Private Long-term Care Insurance. Washington, DC: Brookings Institution; 1994.
66. Wiener JM, Illston LH. Health care financing and organization for the elderly. In: Binstock RH, George LK, eds. Handbook of Aging and the Social Sciences. 4th ed. San Diego, Calif: Academic Press; 1996:51-74.
67. Reuben DB, Silliman RA, Traines M. The aging driver. J Am Geriatr Soc. 1988;36:1135-1142.
68. Juengnst ET. The ethics of prediction. Genome Sci Technol. 1995;1:21-36.
69. Annas GJ. Genetic prophecy and genetic privacy. Am J Public Health. 1995;85:1196-1197.
70. Rothenberg KH. Genetic information and health insurance. J Law Med Ethics. 1995;3:312-319.
71. Uhlmann WR, Ginsberg D, Gelehrter TD, et al. Questioning the need for anonymous genetic counseling and testing. Am J Hum Genet. 1996;58:393-397.
72. Mehlman MJ, Kodish ED, Whitehouse P, et al. The need for anonymous genetic counseling and testing. Am J Hum Genet. 1996;58:393-397.
73. Harper PS. Huntington disease and the abuse of genetics. Am J Hum Genet. 1992;50:460-464.
74. Turney J. Public understanding of science. Lancet. 1996;347:1087-1090.
75. Lapham EV, Kozma C, Weiss JO. Genetic discrimination. Science. 1996;274:621-624.