Sunday, October 30, 2011

Information wants to be licensed?

We're always on the lookout for new therapeutic interventions, particularly behavioral interventions for our guys.

Since we're physicians, we're used to finding those interventions in handbooks, manuals and the like. Knowledge that comes with a creation history, but that is public.

Of course even in medicine that's not quite true. I've always been struck by how little ophthalmology, for example, is actually written down. Yes, there are lot of ophthalmology textbooks, but they seem to leave out a lot of the actual practice of eye care. Orthopedics was the same way. General medicine had the best public coverage.

In the 1980s medical-process patents began to appear in clinical practice [1], though, surprisingly, Congress actually moved to limit their impact in 1996. In Nursing care several "instruments" are owned by publishing companies and cannot be used without license.

There are similar issues in science, particularly in genomic research. The "iceman" (Otzi) genome is still a carefully held sequence, worth fame and grants to its owners. Archeologists are infamous for restricting access to ancient documents (ex: Dead Sea Scrolls).

So in the worlds of science, engineering and medicine there's a spectrum of open knowledge.

We're discovering that much of behavioral therapy for autism tends towards the closed end of this spectrum; many programs are patented and unpublished.

I'm unsure how important this is. It may be that patented programs are not only "secret" but also unstudied. Idiosyncratic therapeutic interventions may be harmful or wasteful (in this world, since time is limited, wasteful is harmful). Perhaps we're better off not knowing what's in them.

On the other hand, secret knowledge is yet one more obstacle to information sharing in the cognitive disability community. It's a part of a bigger problem that's getting more of my attention...

[1] Link intentionally made to a NEJM restricted access article.

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