Friday, May 05, 2006

Medical wiki revisited - via Respectful Insolence

As we've discussed the promise and danger of open collaboration wikis for medical information over the last week or so, many have raised concerns about who might be providing information for such sources. Several of us have expressed concern that zealots or others with a particular agenda, usually not supported by science, might hijack entries on more controversial or polarizing issues.

My ever-thorough blogging colleague, Orac, has found one example that takes this concern to an extreme: an entire wiki that is not only supported by, but where authorship is exclusive to, the faction who does not accept that the science that supports HIV infection as the cause of AIDS. Orac's post is enlightening because many of my colleagues don't really think that the HIV deniers are all that significant in the public discourse these days.

Actually, I have been quite shocked at just how influential and pervasive groups have become on the Web who, I believe, have the right intentions initially but refuse to budge on their hypotheses when proven wrong by the body of accumulating data. What do I mean? I mean the people for whom hypotheses become beliefs in the face of numerous studies that refute their position. I mean the HIV deniers that have trolled Tara at Aetiology, the mercury/vaccination/autism movement that comes to visit Orac, and the anti-evolution folks who plague PZ and others.

Many of us in biomedical research often just blow off these "believers" as a fringe element. But most of my colleagues would be shocked by how rabid and pervasive this fringe element has become. I am all for open discourse but the scientific method should carry the day.

Freedom of speech most certainly defines the web. But thinking that is not supported by data has no place in medical reference material. More than misleading, it can be downright dangerous. This is a very serious issue that must continue to be considered by my colleagues and visionaries like Peter Frishauf and Larry Sanger as they move forward with their respective projects.

3 Comments:

At Thu May 11, 12:58:00 PM EDT, Anonymous HankBarnes said...

Hmm. I thought we had a better understanding a bit ways back, AbelPharmboy.

But, simply calling people "HIV Deniers" is sloppy and stupid.

So, if you are referring to me as "troll" at Tara's blog, I hope you are well-versed in the AIDS literature.

You were pretty ignorant about AZT, when we earlier discussed it.

Here's a 2003 paper by Reisler in JAIDS.

This paper concerned a 5-year retrospective study of AIDS patients on the drugs.

It found that of nearly 3000 AIDS patients on medication, 675 developed a severe,life-threatening event (most commonly liver failure), while 332 developed an AIDS event.

So, plausibly, this would suggest that twice as many people are severely injured from the "drugs," than the virus.

Quoting Reisler:

All 4 classes of antiretrovirals (ARVs) and all 19 Food and Drug Administration-approved ARVs have been directly or indirectly associated with life-threatening events and death.

So, if you were not referring to me above, I apologize, but if you were, you should stick to the published papers on this issue, rather than throw around meaningless epithets.

Hank Barnes

 
At Fri May 12, 07:31:00 AM EDT, Blogger Abel PharmBoy said...

Mr. Barnes, I also thought we had a better understanding. I regret that you were offended but I did not mention you by name. In fact, I was not referring to you personally and it is your brusk comment that is bringing attention and association to you and the incidents on Tara's blog.

To call me "sloppy and stupid" and "ignorant about AZT" is lacking of the civility I thought we had agreed to. As you know, I have long respected the work of Prof Duesberg but could not think of a more concise term than "HIV deniers." Please accept my apologies if this has offended you.

 
At Fri May 12, 12:21:00 PM EDT, Anonymous HankBarnes said...

Please accept my apologies if this has offended you.

Oh, thanks for the "Clinton-esque" apology -- no, I wasn't offended. I was pointing out that the term "HIV deniers" is borderline slanderous and totally unscientific.

You wrote:

I mean the HIV deniers that have trolled Tara at Aetiology, the mercury/vaccination/autism movement that comes to visit Orac, and the anti-evolution folks who plague PZ and others.

I often post at Tara's and I assert that much of the AIDS science is bullshit, and I cite papers to support this assertion.

For example, I cited the Riesler paper which shows the dangers of AIDS drugs.

So, which "trolls" were you talking about?

Hank Barnes

 

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