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Last fall in Chicago,
at a conference sponsored by the Alzheimer's Association and the
National Institute on Aging, doctors and researchers met to discuss
an ethical dilemma that has grown increasingly familiar as advances
in diagnostic techniques outstrip the therapeutic abilities of
the medical profession. The meeting focused on the use of a medical
test for a particular heart condition 
a test that can also, in some cases, predict with 90 percent accuracy
whether someone will develop Alzheimer's disease by the age of
80. The question that arose time and time again was Should patients
tested for the heart condition be told of their risk of contracting
Alzheimer's disease, when there is little if anything medicine
at present can do to prevent or ameliorate the condition? 
Some people
believe that the answer to this question is no: if the information
is of little therapeutic value, it's of little value to the patient
as well. It is wrong to burden the patient with troubling news
when there is little or nothing that the physician can do about
it.
At this stage
in the history of medical practice,
we
may well be surprised to encounter such a response. Over the past
few decades there has been an intense effort to articulate and
defend a person's right to be informed of his or her medical condition.
Not so long ago, this right was not widely acknowledged. Health
professionals generally assumed that, in the case of certain diseases,
patients didn't really want to know. Moreover, even if they did
want to, they wouldn't really understand the diagnosis; and even
if they did want to know and could understand, they would be so
psychologically harmed by the information that the result would
likely be, if not suicide, then a clinical depression that would
interfere with any sort of available care. Over the years the
arguments attempting to defend this medical paternalism have been
carefully examined and successfully undermined.
The very
idea of health professionals deciding whether a patient should
know his or her medical condition is now routinely criticized
in bioethics courses. Nonetheless, the advent of genetic testing
appears to have provoked a resurgence of paternalistic thinking,
especially in those cases where doctors can detect the genetic
condition associated with a particular disease, but are as yet
unable to prevent or treat that disease.
Lee
M. Silver
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