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

被引:166
作者
Post, SG
Whitehouse, PJ
Binstock, RH
Bird, TD
Eckert, SK
Farrer, LA
Fleck, LM
Gaines, AD
Jeungst, ET
Karlinsky, H
Miles, S
Murray, TD
Quaid, KA
Relkin, NR
Roses, AD
StGeorgeHyslop, PH
Sachs, GA
Steinbock, B
Truschke, EF
Zinn, AB
机构
[1] CASE WESTERN RESERVE UNIV, SCH MED, DEPT GENET, CLEVELAND, OH 44106 USA
[2] CASE WESTERN RESERVE UNIV, SCH MED, DEPT EPIDEMIOL & STAT, CLEVELAND, OH 44106 USA
[3] CASE WESTERN RESERVE UNIV, DEPT ANTHROPOL, CLEVELAND, OH 44106 USA
[4] UNIV HOSP CLEVELAND, ALZHEIMER CTR, CLEVELAND, OH 44106 USA
[5] VET AFFAIRS MED CTR, DEPT NEUROL, SEATTLE, WA 98108 USA
[6] ALZHEIMERS DIS & RELATED DISORDERS ASSOC, CLEVELAND AREA CHAPTER, CLEVELAND, OH USA
[7] BOSTON UNIV, SCH MED, DEPT NEUROL, BOSTON, MA 02118 USA
[8] MICHIGAN STATE UNIV, CTR ETH & HUMANITIES LIFE SCI, E LANSING, MI 48824 USA
[9] RIVERVIEW HOSP, ALZHEIMERS DIS RES PROGRAM, PORT COQUITLAM, BC, CANADA
[10] UNIV MINNESOTA, CTR BIOMED ETH, MINNEAPOLIS, MN 55455 USA
[11] SUNY ALBANY, COLL HUMANITIES & FINE ARTS, DEPT PHILOSOPHY, ALBANY, NY 12222 USA
[12] ALZHEIMERS DIS & RELATED DISORDERS ASSOC, CHICAGO, IL USA
[13] INDIANA UNIV, MED CTR, DEPT MED & MOL GENET, INDIANAPOLIS, IN USA
[14] CORNELL UNIV, MED CTR, NEW YORK HOSP, DEPT NEUROL & NEUROSCI, NEW YORK, NY 10021 USA
[15] DUKE UNIV, MED CTR, DEPT NEUROL & NEUROBIOL, DURHAM, NC USA
[16] UNIV TORONTO, CTR RES NEURODEGENERAT DIS, TORONTO, ON, CANADA
[17] UNIV CHICAGO, MED CTR, DEPT MED, CHICAGO, IL 60637 USA
来源
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION | 1997年 / 277卷 / 10期
关键词
D O I
10.1001/jama.277.10.832
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Objective.-Primary caregivers should be aware of recent progress in the genetics of Alzheimer disease (AD) and of the clinical and ethical considerations raised regarding the introduction of genetic testing for purposes of disease prediction and susceptibility (risk) analysis in asymptomatic individuals and diagnosis in patients who present clinically with dementia, This statement addresses arguments for and against clinical genetic testing. Participants.-The 20 participants were selected by the investigators (S.G.P., T.H.M., A.B.Z,, and P.J.W.) to achieve balance in the areas of genetics, counseling, ethics, and public policy, and to include leadership from related consensus projects. The consensus group met twice in closed meetings and carried on extensive correspondence over 2 years (1995-1997). The project was supported by the National Human Genome Research Institute of the National Institutes of Health. Evidence.-All 4 involved chromosomes were discussed in group meetings against a background of information from several focus group sessions with AD-affected families. The focus groups comprised volunteers identified by the Cleveland Area Chapter of the Alzheimer's Disease and Related Disorders Association and represented a variety of ethnic populations. Consensus Process.-The first draft was written in April 1996 by the principal investigator (S.G.P.) after the consensus group had met twice. The draft was mailed to all consensus group members 3 times over 6 months for extensive response and redrafting by the principal investigator until all members were satisfied. Conclusions.-Except for autosomal dominant early-onset families, genetic testing in asymptomatic individuals is unwarranted. Use of APOE genetic testing as a diagnostic adjunct in patients already presenting with dementia may prove useful but it remains under investigation. The premature introduction of genetic testing and possible adverse consequences are to be avoided.
引用
收藏
页码:832 / 836
页数:5
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