Respectful Insolence

Medical wiki revisited

Last week, I wrote a rather lengthy (or, as my detractors would probably call it, “long-winded”) post about the concept of a medical wikipedia. As you may recall, I expressed considerable skepticism about whether the wikipedia concept could work as well as its boosters claim it could. Even though others have clarified what a medical wikipedia could and could not do, I still can’t help but worry that activists and alties would hijack the wiki for their own purposes.

Now I’ve found an actual example to consider, although it’s not quite what I warned about.

It turns out that there is an AIDS Wiki. But it’s not a mainstream AIDS wiki. Oh, no. It’s an HIV/AIDS dissident wikipedia designed to highlight the views of Harvey Bialy, Celia Farber, and other HIV/AIDS “skeptics” who do not accept the science indicating that the human immunodeficiency virus causes AIDS. Now, I’m not so worried about this particular wiki for the simple reason that its creators are quite straightforward about their purpose:

AIDS Wiki is a community gathering place for AIDS dissidents to assist and foster activism. The wiki reflects a pro-dissident POV, although the diversity of opinion present among AIDS dissidents is respected. Verifiability criteria are relaxed in good judgment regarding reports of recent newsworthy events and announcements of upcoming planned events.

And even the HIV “dissidents” don’t entirely trust the wiki concept; they are not foolish or idealistic enough to let just anybody edit their wiki’s articles:

Your experience and expertise would be most welcome in continuing these articles and initiating new entries. Unlike most wikis, this one can be read by anyone, but can only be edited by AIDS dissidents who have a login account.

In other words, if you do not accept the contention of HIV “skeptics” that HIV does not cause AIDs and do not fit their definition of AIDS dissident given as someone who “denies, challenges, or questions, in some way, the prevailing scientific consensus that the human immunodeficiency virus (HIV) is the cause of acquired immune deficiency syndrome (AIDS),” you won’t be allowed to edit the articles on this particular wikipedia, even when they post things as vacuous as:

Indeed, John Maddox, former editor of Nature magazine, has given a simple explanation of the hypothesis: “HIV causes AIDS, in some manner not understood; most of those infected will develop the disease.” [9] Note that Maddox’s cryptic version of the hypothesis contains almost no real content and is virtually worthless in terms of predictive or explanatory power.

Now there’s some cohones, to claim that mainstream science’s contention that HIV causes AIDS is “cryptic” and “lacks predictive or explanatory power,” when the AIDS/HIV dissidents seem utterly unable to do any better. It’s a similar sort of argument as creationists use when they point to the gaps in the fossil record and try to claim that these gaps somehow cast serious doubt on evolutionary theory. In this case, just because we don’t understand everything about how HIV infects T cells and causes AIDS, the “dissidents” are trying to argue that this means that the hypothesis that HIV causes AIDS does not that such gaps in our knowledge means that the hypothesis that HIV causes AIDS is useless and suspect. Moreover, contrary to what the dissidents claim, we actually do know quite a bit about how HIV causes AIDS, and that over 90% will progress to AIDS within 12 years or so of an HIV infection.

Indeed, the wiki itself reveals the paucity of the alternative hypotheses that AIDS “dissidents” can put together. Indeed, it’s even very lacking in articles on some very basic topics necessary to understand their side of the entire debate! For example, as of this writing, the entry for AIDS is nothing more than a stub. What is the “dissident” view of what HIV is? We won’t learn it from this wiki yet. The same is true for the entries for HIV, HIV disease, and others, although the wiki does have a lengthy entry on AIDS dissidents. (You’d think that those would be among the top priority items that articles would be requested for in a “dissident” wiki; indeed, if I were an HIV/AIDS “dissident” starting such a wiki I wouldn’t even put it online without at least preliminary versions of articles explaining the “dissident” view on such important topics included. In contrast, the wiki does have an entry for what “dissidents” call the “AIDS phenomenon.” So let’s see if it’s any more informative, predictive, or offers any more explanatory power than the scientific consensus:

The AIDS phenomenon is a term often used by AIDS dissidents to refer to AIDS. It is used to stress the fact that AIDS is not merely, or even primarily, a medical condition, but rather, in the words of biochemist David Rasnick, “a sociological phenomenon held together by fear, creating a kind of medical McCarthyism that has transgressed and collapsed all the rules of science, and imposed a brew of belief and pseudoscience on a vulnerable public.” (Spin, June 1997)

A “social phenomenon held together by fear”?

Nope. Not much explanatory or predictive power there. In fact, I couldn’t find any listing in the wiki that even hazarded a coherent alternative hypothesis. Indeed I’ve yet to see an HIV “dissident” provide an alternative hypothesis that has as much evidence to support it or as much predictive power to guide research and treatment as mainstream medicine’s HIV hypothesis. Indeed, many of the “alternative” hypotheses promulgated by “dissidents” are based on rather easily debunked myths or misrepreentations of the science behind HIV. These myths can cause real harm.

Now that we’ve discussed how the concept of a medical wiki can be used to promote pseudoscience, let’s return to a discussion of why this is a potential problem.

As I said before, at least this AIDS wiki is honest about its bias and intent, putting it right on the front page. Knowing that bias, it’s possible to be more skeptical of the claims made. However, it’s not too hard to imagine, for example, alternative medicine wikis where mainstream doctors and those skeptical of some of the more fantastical claims of alt-med purveyors are excluded. The paucity of fleshed out articles in this particular wiki also demonstrates a key weakness of highly specialized wikis such as this: obtaining enough material. One of the reasons Wikipedia works is because there are millions upon millions of readers, a small fraction of whom will write and edit articles. The readership of a wiki like the one above is much smaller, and the pool of potential writers and editors correspondingly smaller and made even smaller still by the sringent restrictions on who can post and edit. Consequently, there is very little material in this wiki.

In any case, it’s not that difficult to imagine an alternative medicine wiki not being as clear about its agenda as the HIV/AIDS “dissident” wiki, mainly because its creator would likely be a true believer and wouldn’t see the advocacy of alt-med to be problematic. If the reader isn’t aware of the bias behind a wiki, then it’s harder for that reader to evaluate the claims being made. Indeed, it’s not so difficult to imagine many competing wikis, all with different agendas. For example, if I were ever to start a wiki, my clear bias, for which I would make no apology at all, would be towards evidence-based medicine. Others likely would not be so stringent–except, perhaps, in keeping out dissent, as the HIV/AIDS “dissident” wiki is.

Does the possibility of a Balkanization of the medical “wikisphere” into many wikis (for example, the Flu Wiki) mean a general medical wiki shouldn’t be attempted? Not necessarily, as such a proliferation would be expected to be the normal course of maturation of the medical web and blogosphere, much as the proliferation of specialty journals occurred as modern medicine matured. Undertaking a general medical wiki, however, would be an enormous task, not to be undertaking lightly or without a clear understanding of the potential pitfalls. At the very least, it should have the same level of safeguards in it to prevent alties from taking it over that the AIDS Dissident Wiki has to prevent those of us with a “conventional” view of HIV from trying to edit its articles, as few as they are at the moment. It also strongly suggests that claims that any medical wiki could ever become the “definitive” source for medical information for patients and/or scientists and physicians should be taken with a very large grain of salt. Wikis are tools, nothing more, and it is ill-advised to start a medical wiki unless it is with eyes wide open to the potential problems.

Comments

  1. #1 Greg P
    May 3, 2006

    For some time I’ve thought that there should be some alternative to the traditional print press regarding medical information.

    I used to subscribe to Lippincott & Williams Clinical Neurology, but the annual subscription eventually seemed expensive for the number of updated pages I was getting.

    Conceptually, I think that a medical wiki could work, though I think better as a number of wikis in specialized areas. There would need to be some control over who could submit, and someone or some group of people would have to have editorial control.

    I’ve bought many a monograph over the years, of varying quality, but invariably they become dated, often appallingly quickly. I would also appreciate a reference that could allow for some alternative discussions (not alternative medicine discussions) about areas where there is more than one legitimate opinion.

    The big question is of course, how is such a project supported? I would be willing to subscribe to such a venture, but there has to be some realism about how much is logical to pay for this. It seems everyone wants these things to make them rich, so subscription to some paltry newsletter, really just a review of various journals, goes for $100 (or $200+). Journal prices are similarly outrageous for individuals.

  2. #2 Laura
    May 3, 2006

    I think a medical wiki is a bad idea. It is good that the AIDS wiki is open about their beliefs but the AIDS dissidents seem to be particularly cocky about their views so it doesnt surprise me. I would be more concerneds about the alties as their advertisements already masqurade as credible medical information. Not to mention I find it ironic that they claim the medical establishment is fear mongering on AIDs and The Bird Flu yet they have a whole conspiracy theory going on. Its a bad idea there are too many people who take everything they read at face value and that can be dangerous in regards to your health.

  3. #3 Flex
    May 3, 2006

    In addition to the problems you mention above, I see two serious problems with wiki in general.

    First, the idea is that experts will add their specific knowledge to the collected knowledge so the accuracy of a wiki is going to be superior to any individual expert. However, experts (or people who claim to be experts) do not always agree. So we see wiki battles.

    Second, the idea of the wiki also assumes that collectively the populous knows more than any individual. This idea is unproven and is subject to the problem of popular wisdom: popular wisdom may be untested and wrong.

    This does not mean that wiki isn’t a good idea, but the limitations of wiki has to be clearly understood.

    Finally, as with any source of information, the best policy is to trust, but verify.

    Cheers,

    -Flex

  4. #4 THE AUSSIE
    May 3, 2006

    I think that is a qualitative discussion that needs to be had with wikis. Fact is that Britannica was once analysed and discovered to have about (from memory) 13,000 entries that were wrong, out of date or inappropriate … an analysis of the Wikis showed a higher numer of incorrect entries, but that fact is that even an authoritative source like Britannica can also be compromised.

    This is why peer review and critical inputs will eventually succeed in a more narrow ‘son of wiki’ concept. It’s also why reporters and professional journalists (for all their errors) will not be supplanted by bloggers.

    One small pedantic thing: it’s cojones, not cohones, although the j is sounded a h in Spanish. The h itself is usually silent, so to a Spanish speaker, you just sounded out coones …

    The Aussie

  5. #5 Chris Noble
    May 5, 2006

    A wiki is only as good as the people that contribute to it.

    The AIDSwiki demonstrates the dangers of group think where a group of people with similar believes get together and reinforce each other.

    Check out this < a href = "http://www.reviewingaids.org/awiki/index.php/HIV/AIDS_hypothesis">entry.

    Two of the points are false. The rest are incomplete.

  6. #6 Chris Noble
    May 5, 2006

    Whoops, the entry I was referring to is this page in the AIDS wiki.

    HIV/AIDS hypothesis

    3. Within weeks after infection, HIV induces antiviral immunity and antibodies, and prior to this antiviral immunity, HIV does not cause destruction of T cells.

    4. However, HIV remains latent in cells, and only several years (at least 5-10) after neutralisation by antibodies, does it attain its cytocidal potential.

    It is certainly news to me that HIV is not supposed to cause the destruction of T-cells during initial infection. It is also news that HIV remains latent for 5-10 years.

    They can’t even coherently summarise the science let alone produce intelligent criticisms.

  7. #7 Matthew
    May 7, 2006

    I’m an outsider to the issue, so what is the agenda of aids dissidents? Why do they not want HIV to cause AIDS? I don’t recall the bible verse that said “thou shall get aids, but not because thou had hiv” so what’s their motive here? Is it just to cover Reagan’s ass almost 20 years later?

  8. #8 Chris Noble
    May 14, 2006

    Darin has now modified his wiki.


    3. Within weeks after infection, HIV induces antiviral immunity and antibodies, and prior to this antiviral immunity, HIV may cause a slight mononucleosis-like illness.


    4.However, after a “latency” period usually ranging between 5-10 years, although potentially up to 15-20 years, it realises its cytocidal potential.

    Now it is less incorrect than before.

    Firstly, HIV causes rapid loss of CD4+ cells during initial infection. This is seen both in human studies and animal models (SIV/SHIV). The “correction” avoids this by not mentioning CD4+ cell levels during acute infection. Before it was completely wrong now it is an error of omission.

    Secondly, HIV causes CD4+ loss at all times during infection. There are two types of persistent infection: chronic and latent. HIV is better described as chronic. It is replicating and causing the depletion of CD4+ cells at all stages of infection. There is a latency in the presentation of clinical symptoms. Again the “correction” skims over this. It does not accurately state the current scientific position. It is just less wrong than before.

    This figure from wikipedia descibes more accurately what happens to CD4+ levels during HIV infection.

    But of course the “definition” of the HIV/AIDS theory on the AIDSwiki was never meant to accurately descibe the current scientific position. Points 3 and 4 were “paradoxes” set up to question the theory. The ultimate source for these “paradoxes” is Duesberg.

  9. #9 Orac
    May 14, 2006

    I noticed some referrals coming from an AIDS “dissident” discussion forum noting my making fun of the AIDS Wiki. I’m sure that the proprietors noted the visits coming from my post and saw just how embarrassingly lame their wiki is so far, lacking, as it does, entries for so many topics. Maybe they also noted your comment as well.

  10. #10 Chris Noble
    May 15, 2006

    My impression was that the “dissidents” were taking the: Orac is taking time to criticise the wiki, therefore we must be onto something line.

    Presumably, when you call something “embarrassingly lame” it really means that you are afraid that the truth about HIV and AIDS is finally coming out and that the AIDS$ industry house of cards is about to come tumbling down.

  11. #11 david baker
    May 24, 2006

    Medipaedia. You could try here:

    http://ganfyd.org/index.php?title=Main_Page

  12. #12 PRT
    July 4, 2006

    Hi All,
    I disagree that wiki is a bad idea for medicine any more than it is for other things. I agree that medicine has some fuzzy logic at times but that makes it all the more important to have a middle ground that people agree on.
    See our wiki at http://www.wikimd.org.