The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective
S. G. Post, P. J. Whitehouse, R. H. Binstock, T. D. Bird, S. K. Eckert, L. A. Farrer, L. M. Fleck, A. D. Gaines, E. T. Juengst, H. Karlinsky, S. Miles, T. H. Murray, K. A. Quaid, N. R. Relkin, A. D. Roses, P. H. St George-Hyslop, G. A. Sachs, B. Steinbock, E. F. Truschke and A. B. Zinn
Center for Biomedical Ethics, School of Medicine, Case Western Reserve University, Cleveland, Ohio 44106, USA.
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.
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