diseased brains [was expletives]

[Luciano Dondero <DOND001@xxxxxx>]

The following was posted to the Privacy Forum, and I think it may be of
interest to those on the Marxism l*st who care about privacy, individual
freedom and the like.

--begin fwd--
Date:    Wed, 21 Feb 1996 15:01:34 -0800 (PST)
From:    Phil Agre <pagre@xxxxxxxxxxxxxx>
Subject: Alzheimer's, mental defectives, and privacy

Today's paper includes a very disturbing article:

  Gina Kolata, Research links writing style to risk of Alzheimer's, New York
  Times, 21 February 1996, page A7.

It reports a study of autobiographies written by 93 nuns when they entered a
convent early in this century, correlating their writing style with whether
they got Alzheimer's disease sixty years later.  The study claims that one
attribute of their writing correlates very strongly indeed with their later
Alzheimer's status, namely what they called "idea density" -- how many ideas
were present in a given stretch of writing.  It does not at all follow that
people who write with fewer ideas are more likely to get Alzheimer's, since
writing practices differ in different situations, and this is just one sample
of people from very particular social and historical circumstances, writing
in response to a very particular assignment.  A more plausible conclusion,
though, is the one that the scientists emphasize, namely that Alzheimer's
disease is a long-standing, possibly lifelong disorder whose gross effects
only become apparent in old age once the cumulative brain tissue destruction
has become massive.

I hope that this conclusion is false.  Suppose it is true.  Then it seems
altogether plausible that someone will come up with a reliable clinical test
for Alzheimer's that will work on people in their 20's, or even on children.
The consequences of this test would be horrible.  First, a large portion of
the population would be walking around knowing that their brains were being
progressively consumed by this incurable illness.  Second, a large portion
of the population would risk carrying a label -- the 21st century equivalent
of terms like "mental defective" that can consign a person to second-class
social existence.  What employer will abstain from learning a job applicant's
Alzheimer's status, particularly when the job involves training whose payback
will be stretched over a long period?  Will a person's Alzheimer's status
become public knowledge, for example as part of their credit record?   Will
the kind of shallow and ineffectual "medical privacy" legislation that we're
seeing in Congress this year permit Alzheimer's status information to leak
out into offshore databases?

It can get much worse.  What happens if, as many scientists apparently expect,
it turns out that Alzheimer's is inherited, or (more to the point) predictable
from parents' DNA?  Will whole categories of people be dissuaded from having
children who are likely to be susceptible to the disease?  Will those people
be shamed if they do have children?  Will they have to make decisions about
when and how to tell their children of the condition?  Precedents for these
questions do exist in some diseases that affect limited populations, but
Alzheimer's is much more prevalent.  Someone will no doubt argue that society
could vastly improve its economic performance and decrease its medical bills
by discouraging people from giving birth to infants at risk from Alzheimer's.
This will not be a happy day.

Phil Agre, UCSD
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--Luciano Dondero--



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