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My father suffers from Alzheimer’s disease and I am increasingly concerned about myself and
wondering whether I am also likely to develop the disease. I have read about genetic testing that would let me know what
the future may hold for me. Is this something I should consider? —
Curious in Queens
Dear Curious,
Genetic testing for Alzheimer’s disease (AD) is an
issue that comes up quite often on the Chapter’s 24-
hour Helpline. People throughout the five boroughs are
wondering whether or not they should get tested and what
the implications of the test results may be.
What Does the Test Look For?
Scientists have identified one gene—apolipoprotein
(APOE)—which may be related to memory. When
undergoing genetic testing for Alzheimer’s disease, the
information you receive concerns this gene.
APOE has three common forms: e2, e3, or e4. We all
inherit one form of the gene from each parent. APOE-e4
is the form associated with Alzheimer’s disease. Those of us
who carry one APOE-e4 gene have three to five percent
higher risk of developing AD than those who do not
inherit APOE-e4. And those who inherit two copies of
APOE-e4 have a fifteen percent greater risk of developing
the disease. The average lifetime risk of ever developing
Alzheimer’s disease is approximately ten percent in the
general population.
Remember, an increase in risk does not mean you will
develop the disease: people with two copies of APOEe4
do not invariably develop Alzheimer’s disease, and in
many cases the disease occurs in individuals who have not
inherited any copies of the gene.
It is also important to remember that there are currently
no effective preventive treatments available for AD.
With this in mind, it is important to ask yourself, “What
are the practical implications of getting tested?”
Should I Get Tested?
Some people want to know despite the fact that there is
nothing they can do about it. Others express not wanting
to know for that very reason. And still others fear being
denied insurance or future care because of a positive test
result.
Federal law prohibits health insurance companies and
employers from discriminating based on a positive test for
APOE-e4. However, this law does not apply to long-term
care or disability insurance. Anonymous testing may resolve
this issue and should be available in your area. Check
with your doctor for more information about anonymous
testing, which would protect privacy, further prevent
discrimination, and keep test results from becoming part
of medical records.
Historically, some in the field have expressed concern
that a positive test result could have serious negative
implications on one’s psychological well being. After all, if
nothing can be done to treat or prevent the disease, what
are the benefits of knowing what your future may hold?
You may have read the results of the REVEAL study
in the July 16 issue of The New York Times, which found
that learning of your APOE-e4 status does not cause
psychological harm.
Before you run out to get tested, keep in mind that
this is only one study, and the results cannot necessarily
be generalized to the larger
population. The REVEAL
study, which garnered very
interesting results, sampled
only 162 adults.
What it boils down to
is that individuals need to
determine what is best for
them. Weigh your options
carefully and discuss them
with your physician. If you
decide to move forward,
genetic counseling will be
provided before a test is
ordered and again when the results are obtained. Genetic
counselors will also be helpful in determining if testing is
the right choice for you.
Whatever you decide, our 24-hour Helpline is here
to provide you with education, information and support
throughout your journey with Alzheimer’s disease.
The 24-hour Helpline is
always available to answer
your questions and help you
through difficult times.
We can be reached 24 hours
a day, 7 days a week, 365
days a year at 800-272-3900
or helpline@alznyc.org.
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