Original scientific paper
THE ETHICS OF TESTING BRCA1: BETWEEN SATISFACTION AND FEAR
Erik Parens
; Hastings Center, New York
Abstract
Presymptomatic testing for peri/ous, incurable diseases will
certainly do a lot of good, but it will also give rise to problems
ethical in nature. Today, it is the testing for SRCA 1, the genetic
predisposition for breast cancer. The main reason for satisfaction
is the discovery of a mutated gene before any signs of illness.
Whether the illness will develop or not depends on the strength of
the gene itself and other reasons. The SRCA 1 is a big gene with
numerous variants, making false-positive as well as false-negative
results possible, therefore, such testing has to be accompanied
by genetic advising. Moreover, in all testing certain ethical
principles have to be respected as for example, confidentiality,
equality, autonomy and others. Through confidentiality the secrecy
of test results for third parties can be ensured, while through
equality testing can be made accessible to all social cJasses.
Individuals should decide for themselves if they want to be tested,
without coercion, but it is difficult to speak of the principle of
autonomy in testing chi/dren and adolescents. If testing is performed
with noble intentions and if it is followed by undirected
counselling with respect for ethical principles, we can truly be satisfied.
Reasons for anxiety and even fear are discrimination in
employment and health insurance. Non-recognition of the principles
of autonomy is also possible due to saving money for medical
treatment. Obviously, the number of tests appearing on the
market will be steadily growing, the possible result of which could
be testing for profit. The SRCA 1 test will probably be examined on
the market, and not in the well-controlled conditions of a research
center with genetic counselling.
Keywords
Hrčak ID:
31931
URI
Publication date:
1.5.1996.
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