ETHI: Genetic Testing

[Hans Goerl <GENETHICS@delphi.com>]

The following press release touches on many of the ways genetic testing is
probably going to change societies throughout the world. Most of the advice
and questions below can be appropriately asked about predictive or
diagnostic tests for many diseases.

Headline: ALZHEIMER'S ASSOCIATION URGES CAUTION ON ALZHEIMER GENE TESTS
Wire Service: PR (PR Newswire)
Date: Fri, Jun 30, 1995
    CHICAGO, June 30 /PRNewswire/ -- The Alzheimer's Association urges
people with relatives stricken by Alzheimer's disease in their 40s and 50s
to cautiously consider the value of genetic testing.     A new study
published this week in Nature identifies a mutant gene that may be
responsible for "early-onset" Alzheimer's and for which a test is available.
 Early onset Alzheimer's disease affects approximately 400,000 of the four
million Americans with Alzheimer's disease.     "There is no prevention or
effective treatment for Alzheimer's disease, so people should consider
carefully whether to be tested," said Edward Truschke, association
president.  "Testing should only be done in conjunction with comprehensive
pre- and post-test counseling."     The Alzheimer's Association also
recommends health professionals and policy makers follow these genetic
testing principles:

    1.  Having a gene associated with Alzheimer's disease does not mean a
person has the disease.     2.  The presence of a gene should not be a basis
for under writing insurance premiums for health care, long term care or life
insurance, nor should it be used to infringe on any individual's access to
care and services.     3.  The presence of a gene associated with
Alzheimer's disease should not be used to deny access to housing,
employment, health care or any other goods and services.     4.  The
presence of a gene associated with Alzheimer's disease does not qualify an
individual for disability-related benefits; disability support should be
based on functional criteria rather than on a genetic test.     5.  Because
of possible social consequences, anonymous testing should be available,
thereby making the fact of, and results of, genetic testing for Alzheimer's
disease invisible to an individual's medical records.     6.  Genetic
testing for Alzheimer's disease should be done with pre- and post-test
counseling, which includes a full discussion of the implications of the test
and provides the individual with all information necessary to make an
informed decision.

                                         ******

    To learn more information, call the Alzheimer's Association at
800-272-3900.     -0-                          6/30/95


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Just imagine sitting down for a job interview and learning that your
prospective employer knows you have one of these genes!

Apparently, some nursing home chains and other long term care facilities
have "No Alzheimer's" policies. They are using existing  genetic tests to
screen out those who have the condition. Will we soon develop a large
population of Alzheimer's victims unable to find care or insurance?

If ex-president Reagan has this gene, what effect would it have had on
history if this had become known? What effect would it have on his children?

Where are all the counselors going to come from? We only have around 1100 in
this country and are "minting" them at around 50 per year.

How are we going to put in place a capability for anonymous testing? The
people with the strongest interest in obtaining this information, insurance
companies and employers, already have indirect control over most of the
health care industry and are rapidly acquiring direct control.


Hans Goerl
The Genethics Center