Neuropsychology: a tragic contrast

[heatherm@eln.bc.ca]

Of all the areas affected by the access limitations that have resulted
from the serials crisis, it seems to me that the contrast between the
extremely high prices (and hence limited distribution) and the great
poverty experienced by many people suffering from illnesses of the brain.

Let us compare and contrast, for example, the $18,578 price tag of a
subscription to Brain Research (2002 data found at SPARC Create Change web
site at http://db.arl.org/journals/FMPro), with the great tragedy of one
common illness affecting the brain - schizophrenia.  The tragey of
schizophrenia, which often strikes in adolescence and often becomes a
chronic, lifelong disability, is , one of the best reasons I can think of
for conducting research on the brain, even though this is not necessarily
reflected in the portion of research funding that goes into this
particular illness.  While the commercial sector pockets profits from the
publication of research, those who are the subjects of the research and
whose brains may well be pictured in this journal, frequently suffer from
great poverty due to the effects of the illness, and make up a large
proportion of the homeless in North America.

As a researcher, I have been taught to always talk to human research
subjects about how the results of a study will be used.  No doubt it is a
difficult task to have to talk to patients with such horrendous illnesses
as schizophrenia, Alzheimer's, etc., etc., in order to obtain permission
to conduct research in order to learn better how to diagnose and treat the
illness, as well as to educate professionals. I wonder how many
researchers, however (if any) explain to patients or families that the
exclusive copyright of published results of research they have contributed
to will be handed over to commercial, profit-based companies? How would
they react if they knew?

If they realized that this system resulted in limited access to the
results of this research, and that OA had the potential to make it easier
for any doctor, nurse, social worker, educator, etc., that they or their
relative might need help from, to understand these illnesses, would they
not be strongly inclined to wish the results to be OA?

Mental health advocates are working hard to help all of us to understand
that people do become afflicted by biologically-based illnesses, and to
fight the stigma attached.
 OA would greatly help in this laudable effort.  This is one area where I,
personally, would really, really like to see move to OA, as soon as
possible.

a personal view by,

Heather Morrison
Project Coordinator
BC Electronic Library Network
heatherm@eln.bc.ca
Burnaby, BC V5A 1S6