The shape of HIV denial

What motivates someone to deny that a disease -- one which kills millions of people -- exists? Why would someone claim that the scientifically-established cause of that disease is actually the product of a vast conspiracy? Why would anyone believe them? This is a question for psychologists, but also for epidemiologists and public health professionals who must deal with the implications of those beliefs.

Tara Smith and Steven Novella have written an excellent, exceptionally readable article in PLOS Medicine which describes the shape and scale of the problem of HIV denial. They point to a number of sources of denial, including the president of South Africa and the rock group The Foo Fighters, and explain why these high-profile challenges to the scientific literature are often unaddressed by scientists themselves:

Because these denialist assertions are made in books and on the Internet rather than in the scientific literature, many scientists are either unaware of the existence of organized denial groups, or believe they can safely ignore them as the discredited fringe.

As Smith and Novella point out, in fact all of the denialist assertions have been addressed by scientists, but because the general public doesn't stay abreast of scientific literature, they continue to believe and even propagate dangerous denialist rhetoric. Scientists don't believe it's professionally necessary to wade into the Wild-West-style online debates on the topic, because their papers still get published in peer-reviewed journals, and their presentations at conferences are well-received. Clearly, there is a disconnect between mainstream science and a significant portion of the population who continue to support HIV denialists.

Smith and Novella demonstrate that these denialists are often motivated by greed and self-interest:

One such practitioner, Dr. Mohammed Al-Bayati, suggests that "toxins" and drug use, rather than HIV, cause AIDS. Dr Al-Bayati personally profits from his HIV denialism: for $100 per hour, Al-Bayati will consult "on health issues related to AIDS, adverse reactions to vaccines and medications, exposure to chemicals in the home, environment or workplace" (http://www.toxi-health.com/). Similarly, German vitamin supplier and HIV denier Matthias Rath not only pushed his vitamins as a treatment for AIDS, but his spokesman refused to be interviewed by Nature Medicine about the case because he claimed the journal is "funded to the hilt with drug money."

Here's an example of not only greed, but also hypocrisy, as the very people profiting from denialism claim that the profit motive tarnishes the real science on HIV and AIDs.

I encourage you to read the entire article, for an eye-opening view into the world of denialism. I'd also be interested to see some research into why people fall for the claims of denialists -- perhaps CogDaily readers can offer some insight.

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There is an excellent analysis. There seems to be something very attractive in the subject position such beliefs offer: the role of embattled-advocate- speaking-truth-to-power seems to be common to HIV denalists, Holocaust deniers, creationists, and (this is my own field) the Shakespeare-wasn't-Shakespeare brigade.

By grubstreet (not verified) on 23 Aug 2007 #permalink

I have been living in Greece for 3 years now. The health system here appointed me a dermatologist who I went to visit to have some moles checked. Mind you, I spent 15 years in Australia where I met my wife. So we both went in to be checked. I told him about being concerned living for 15 years under the hole in the ozone layer in Australia and that the media there had sensitised us to be careful with the sun. My wife siting next to me, his response was that Australians and Americans have a hole in their heads and the sun is not to blame, it is the chemicals and the toxins. He proceeded to blame it all on the multinationals and the zionists... and that was only part of the insult.

Anyway, this guy is meant to be a doctor and he spins this crap. I expect many more doctors spin even worst stuff which is then believed by many people causing a movement of undoing the awareness which took many years to build.

I have not read the article linked to, so my comment is about this article itself.
It's true that some unethical people want to take finanacial advantage of other people by selling vitamins as the cure of AIDS, but it is also true that there are many people that give their time absolutely free. Their position against HIV as the root of AIDS is both ethical and legit, and their main proposition is the revaloration of the current assumptions.
Humanity has been proven wrong many many times and will continue to be wrong many more times. We cannot assume we get it right the first time, but of course everyone knew the earth was flat, and everyone daring doubting that was punished.
Until there is no undeniable proof of the HIV being the cause of AIDS, then we have the right and even the obligation to doubt it or at least be cautious about it.
Current AIDS medications are very expensive and more so toxic. I am not sure the benefit overcomes the effects.

Also, calling them denialists sounds derogative as if anyone who doubts about HIV is crazy.

By sevillada (not verified) on 23 Aug 2007 #permalink

Sevillada,

I'd suggest you do read the article itself. Unfortunately, denialists do swindle well-intentioned people into believing nonsense. Then those well-intentioned people might convince others of their beliefs, and the problem multiplies. So are the well-intentioned people denialists themselves? Hard to say. But when their actions result in real suffering and death, I don't have much complimentary to say about them, regardless of their intentions. If you're working to help people with a disease, it's part of your personal responsibility to learn the facts about the disease.

I'd also be interested to see some research into why people fall for the claims of denialists

So would I. I might speculate, however. Please bear with me, as I am not attempting to denigrate science.

Science in many ways bears more than superficial resemblance to religion. It has its priests (scientists), that speak a unique, jargon-filled lingo that only fellow practitioners can fully understand. Therefore, the "common people" have to accept the word of the high priests on what truth is. Most importantly, both religion and science attempt to make sense of the world we live in.

Our increasingly semi-literate society is being raised to question authority, and therefore becomes automatically skeptical of claims that it cannot examine on its own. It is skeptical of religion, but has also become -in some ways- equally cynical of a body of science knowledge that requires a certain level of faith in its practitioners to accept. Given that our society more and more tends to accept those beliefs that serve the needs of the moment and discard those that for whatever reason make us uncomfortable, society then attacks the source of the discomfort, claiming that it is another "religion" whose practitioners are in it for their own self-aggrandizement.

Not that I believe this is the case when it comes to AIDS research. . .or for science in general. But that's my hypothesis.

Anyone want to send me a grant so I can research this? :P

It's common for the undergraduate science curriculum to include a required course in writing for the discipline. Conversely, maybe the graduate curriculum should include a course in communicating scientific findings to the general public.

By tourettist (not verified) on 23 Aug 2007 #permalink

Dave,
In the comment I wanted to point out that I don't think denialist is a good term to name those people who are against the orthodox belief of HIV-AIDS. I think it is a derogatory term and it doesn't really help to the discussion.
btw.. I will read the article soon, i just need time.
I think it is very important that we doubt what most take for granted. That is the one of the principles of science and we would be stuck if we didn't raise questions or concerns.
You call it nonsense, but it might not be. I am sure all the people thought that Galileo talked nonsense and he then proved to be right.
What I constantly hear from those who oppose the opinion of the HIV as the root of AIDS, sometimes called dissidents, is that they only want a close re-examination of what is taken as absolute truth

By sevillada (not verified) on 23 Aug 2007 #permalink

I think "denialist," which is exactly what they are, is in fact a rather tame term for what they are doing, which is killing people and causing them pain.

This is a cognitive psychology blog, not an epidemiology blog, so I'm no expert in HIV/AIDS. Simply reading the linked article, which offers considerably more evidence that Sevillada has and has been reviewed by scholars in that field, convinces me that the denialists are completely full of hogwash. I feel sorry for people who've been duped by them.

Asking for more time to evaluate the scientific evidence for the fact that HIV causes AIDS is like asking for more time to ask whether the Earth is round. It's simply ridiculous.

But whether or not HIV causes AIDS is actually beyond the scope of this blog, so if you continue with your unsupported assertions about this fact, Sevillada, I will have to delete your comments. They're not contributing to the discussion, which has to do with why people are duped by these charlatans, not whether the charlatans are right or wrong.

Why is it that people feel the need to invoke the name of Galileo whenever they feel their point of view is being challenged? It's becoming a very tired cliche. A lot of HIV/AIDS denialists seem to have short memories when it comes to the disease. During the 80's it took a long time for governments around the world to clue into the fact that AIDS was more then a "gay disease" that only affected a small segment of the popluation. It took a lot of work by very vocal members of the popluation to finally raise public awareness of the disease. I think opinions finally shifted in Canada when people began dying after they recieved blood products tainted with HIV. I'm sure all the hemophiliacs who died of AIDS whould have someting to say about HIV denialism. It seem that this form of denialism is part of a much bigger problem. I know people, perfectly educated intelligent people who believe that cancer is caused by toxins and that eating organic vegetables and herbs will cure it. Like the HIV issue there are people who sincerely believe that the drugs used to cure it are the actual cause of cancer. There seems to be a lot of suspicion of the medical community in general.

Conversely, maybe the graduate curriculum should include a course in communicating scientific findings to the general public.

tourettist, I have long been a proponent of putting public communications training in somewhere in graduate/post-graduate years. Some very good people, like Walter Willett at Harvard, feel a sense of obligation to communicate effectively to the public since they indirectly support his research group through taxpayer dollars.

But, as Tara and Steven point out, some scientists may not actually know how vocal and active HIV denialists are. I consider their article a call to arms that we scientists must be more effective in communicating factual rebuttals to anti-science rhetoric.

While it doesn't answer the question as to why people come up with these beliefs in the first place, there are several well-known cognitive biases that would account for why they are maintained or even strengthened. The first one that came to my mind is 'confirmation-bias': loosely, you're more likely to attend to and remember information that confirms your hypothesis. Putting forward a few cases that support your view, while ignoring thousands that are to the contrary would be one example of such a bias. I'm sure scientists have the same general tendency, but are probably more likely to adopt an alternative view if presented with credible evidence. What many non-scientists probably don't seem to realize is that it's not the content of some evidence that makes it credible, but rather the method(s) which created it.

There's an interesting study about how being incompetent can actually boost one's confidence in a field:

http://www.apa.org/journals/features/psp7761121.pdf

A lot of people in the business of denying scientific "orthodoxy" actually know next to nothing about said "orthodoxy". And the people to whom they peddle their nonsense are also mostly ignorant of the scientific facts involved (as Tara point out in her paper). Maybe people are more convinced by a confident-sounding crackpot (whose confidence ironically stems from his/her complete lack of skills in the field in question) than by a more reserved scientist speaking in more tentative terms (but who is experienced and knows what he/she is talking about).

The same would go for global warming deniers, creationists, holocaust deniers, etc.

Even if the general public wanted to stay abreast of scientific literature, it can't because it doesn't have access to scientific journals. Perhaps opening up public access to scientific literature would give the general public the opportunity to be more educated in science. Even those who have an undergraduate background in science generally can't access scientific journals, and the debate remains only within the academic community.

Dave, and the rest...
First of all, you can erase my comments if you wish, though I sincerely thing that would not do any good to anyone, but if you think otherwise, keep my comments in the dark, which is what the government and the pharmaceutical companies want to do with the "radicals".

It's sad how you blame the dissidents on making money out of ignorant people, yet they remain unfunded and support their cause mostly with their own fuds. Let's be respectful and let's call it the AIDS reappraisal movement, because that is what it is. It's not a groups of crazy people saying non sense or dellusional, as much as any one of you want to think that. They are rather scientists and worried people that we might not get all the information we need. It may be the case they are wrong, but it doesn't make them deserve less of your respect, they are actually fighting so you get all the facts.

Peter Duesberg ( http://en.wikipedia.org/wiki/Peter_Duesberg) is an example of who are those in the reappraisal movement.

If you choose to stay ignorant, it is your problem. If you choose not to accept everything the government says as true, welcome.

By Sevillada (not verified) on 24 Aug 2007 #permalink

This "I'm a victim. Please pity me" attitude among denialists gets really tiresome.

No one is censoring you. No one is persecuting you. No one is keeping you "in the dark". Your ideas are rejected not because of any personal animosity against you, but because of the worthlessness of the ideas themselves. When instead of providing well argued rebuttals, a clear and testable theory, and strong evidence, you argue that there's a meanie-weenie conspiracy against you, you just further discredit yourself.

Ironically, Sevillada, your comments so far reflect exactly the type of paranoia and evasiveness that Tara describes in her article. Instead of responding to criticism with something substantive, you begin hurling totally unfounded accusations at others that they're somehow in conspiracy to silence you. That's often a very good sign that you [i]don't have[/i] anything substantive to contribute, and are covering your ass.

The logic behind denialist thinking appears to be the same as that of the logic underlying that of gun control arguments..."Guns don't kill people. People kill people."
Basically, a semantic argument that usually amounts to a half-truth. So the only logical response to a half-truth is neutrality. In other words, denialists should engross themselves in their delusion on paper, but be sure to engage in protected sex, or, at least tell a possible non-denialist partner about their philosophy so that they will be at least given a chance to run for the hills.

Couple of relevant articles for this discussion:

(1) First one provides a discussion of the Duesberg hypothesis and how the claims under this hypothesis have been systematically rejected by scientific inquiry:

http://en.wikipedia.org/wiki/Duesberg_hypothesis

(2) Second one more relevant for this discussion, concerns an artcle about how smart people are quite capable of defending bad ideas:

http://www.scottberkun.com/essays/40-why-smart-people-defend-bad-ideas/

By Tony Jeremiah (not verified) on 24 Aug 2007 #permalink

sevillada -

Whatever the reasons that people choose to deny the science behind many, many more things, than just HIV/AIDS, their actions have real world consequences. Notice that no one here, or at any of the sci-blogs addressing this or any other denialism are calling for silencing denialists. However, I oft think that denialist is too kind a term for it. Crazed murderous nutjobs would be far more appropriate.

I volunteer a certain amount of my time, doing in home care for those with HIV/AIDS. I am well aware of how horrible the HIV meds treat the human body, I have cleaned up enough vomit and bodily waste, that are occasional side effects to those drugs to know full well how unpleasant they are. However, one of the people that I visit, who had to move to a nursing home, listened to this brand of denial, she listened and bought it for too long. She ignored symptom after symptom, illness after illness, until she contracted some sort of virus that ravaged her internal organs to the point that she cannot survive without regular dialysis and continues to get worse. She won't likely be alive a year from now - she's thirty-four, weighing half what she should.

So no, deniar is not an unreasonable aspersion, it's bloody well kind.

I would add that your invocation of Teh Government, is indicative of the pervasive mentality among multi-stripe denialists. I actually think of this as pathological credulity, something that I am willing to admit, I suffer as well. The difference here, is that I recognize that I have this problem and do my best to compensate through education.

Like you, I have an inherent distrust of the government, anyone who doesn't, clearly isn't paying attention. I also have an inherent distrust of corporations, the same disclaimer applies. But at some point, somewhere, one has to find sources that they can trust. At some point, one has to actually attempt to figure out who's telling the truth. This requires paying attention not only to dissenting voices, but both, or more often, all the sides of an issue. Science is not a democratic, consensus methodology by any stretch. However, when one finds that a large part of the consensus says one thing, it behooves us to try to figure out why. Don't just trust someone because they're contrarian, rather look at all the evidence and what conclusions the best evidence available provides.

By the way, after reading Deusberg, and about his hypothesis, common sense dictates that it's a load of crap. This is a rather old hypothesis. The mounting evidence and understanding that has continued to pile up about HIV/AIDS, continually requires that more and more be explained away. When one is required to explain away evidence that negates a hypothesis, rather than doing research and accumulating evidence to support that hypothesis, the hypothesis just might be flawed.

Comments closed due to spam from HIV denialists.

When you post repeated off-topic comments, you are spamming this site. This is a cognitive psychology site, not an "alternative medicine" or any kind of medical site. Comments along these lines disrupt the conversation, making it impossible for our readers to participate.