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Re: The Value of OA

What does open access have to do with the NIH setting up a patient-centered database of genetic disorders? Both are worthy pursuits, not ones that cancel each other out. The argument seems a little fallacious.


Vivian Stieda, General Manager
Health Knowledge Network
Calgary, AB T2N 4N1
phone: 403-220-8250 / fax: 403-282-7992
email: vstieda@ucalgary.ca
URL: www.hkn.ca

Peter Banks wrote:

I have nothing but the highest respect for Sharon Terry, who took
extraordinary steps to understand and find treatment for her
children's condition.

I realize that her experience has made her passionate advocate
for open access, but I am not sure that's the conclusion I would
draw. Why should parents have to go to heroic, extraordinary
lengths--in effect, training themselves as molecular
biologists--to understand a child's genetic disorder? Unlike Ms.
Terry, many will never be able to read the primary literature
even if it were freely accessible.

I would think that rather than proposing to help patients by
promoting OA, the NIH could do far more good by creating a
patient-centered database of genetic disorders, with the latest
information on incidence, etiology, diagnosis, and
treatment--and, perhaps more importantly, a list of any clinical
trials and leading investigators for the disease. Understanding
the disease is important, but even more so is finding a research
clinician who can help the family find the latest treatment

OA seems neither an efficient not an effective way to help
parents in situations like Ms. Terry's. Worse, the singular focus
on it may be hindering discussion of how else the Internet might
be used to help patients and their doctors.

Peter Banks
Banks Publishing
Publications Consulting and Services
Fairfax, VA 22030