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The AIDS ConspiracyScience Fights Back$

Nicoli Nattrass

Print publication date: 2013

Print ISBN-13: 9780231149136

Published to Columbia Scholarship Online: November 2015

DOI: 10.7312/columbia/9780231149136.001.0001

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The Conspiratorial Move and the Struggle for Evidence-Based Medicine

The Conspiratorial Move and the Struggle for Evidence-Based Medicine

Chapter:
(p.149) 8 The Conspiratorial Move and the Struggle for Evidence-Based Medicine
Source:
The AIDS Conspiracy
Author(s):

Nicoli Nattrass

Publisher:
Columbia University Press
DOI:10.7312/columbia/9780231149136.003.0008

Abstract and Keywords

This chapter concludes the book by drawing parallels between the AIDS denialist movement and the anti-vaccination movement—another example of organized opposition to medical science which employs the same conspiratorial moves and symbolic roles of AIDS denialism. In an interesting parallel, poor political leadership also boosted skepticism toward vaccines in 2002 when then UK prime minister Tony Blair equivocated over whether his son had been vaccinated or not—while the press published stories about his wife's support for alternative and mystical therapies. Pro-science advocates defended medical science in the public sphere, especially on the Internet, by setting up dedicated websites exposing cultropreneurs as “quacks,” posting critiques of pseudoscientific and mystical claims, and engaging in debates through comment threads and blogs.

Keywords:   AIDS denialism, AIDS, Tony Blair, anti-vaccination movement, therapies

Earlier chapters argued that AIDS denialism and AIDS origin conspiracy theories both make a conspiratorial move against HIV science. Not only does this undermine HIV-prevention messages, but it leaves people vulnerable to exploitation by cultropreneurs offering untested alternative remedies in the place of antiretrovirals. What makes AIDS denialism particularly worrying is that it has a strong social basis constructed around the roles of hero scientist, living icon, cultropreneur, and praise-singer—all of which assist in forging new forms of identity and social solidarity in opposition to biomedicine. But precisely because these roles are important, they present targets for HIV scientists and AIDS activists in the struggle against them.

Such roles and contestation are not unique to AIDS. For example, the anti-vaccination movement that sprang up around the “hero scientist” Andrew Wakefield was also replete with praise-singers, cultropreneurs, and living icons. And, like the Duesberg case, criticisms were made by scientists against the journal that published Wakefield’s research. This concluding chapter points to the similarities between the two cases—especially with regard to the way conspiracy theories are evoked to construct credibility (p.150) and deflect criticism—and locates both within the broader defense of evidence-based medicine.

The MMR Scare: Echoes with AIDS Denialism

In 1998 the Lancet published a paper by Andrew Wakefield and others from the London Royal Free Hospital suggesting a link between the mumps, measles, and rubella (MMR) vaccine and autism.1 Based on a case series of twelve children with intestinal and mental developmental disorders, the paper reported that parents of eight of the nine autistic children had associated the onset of autism with the MMR vaccine. Wakefield highlighted those parental fears at a press conference and, going beyond the conclusions of the paper, suggested that the MMR vaccine may well have damaged the guts of these children, thereby supposedly allowing harmful proteins to enter the bloodstream and damage the brain.2 Although only one in five children in his study developed bowel problems before they manifested developmental disorders (hence such cause and effect was unlikely), Wakefield told reporters that there was “sufficient concern” in his own mind “for a case to be made for vaccines to be given individually at not less than one-year intervals.”3

Wakefield claimed it was a “moral issue” for him and that he could not support the triple MMR vaccine until his concerns had been resolved. But as he had patented a single-dose vaccine for measles a year earlier, he stood to benefit directly from a swing away from the MMR vaccine. He failed to disclose this, or that he was receiving payments from a lawyer planning to sue manufacturers of the MMR vaccine, or that the parents of some of the children in his study were involved in the legal action (which meant the selection into his study was seriously biased). These ethical problems, as well as his failure to obtain ethical clearance for the research and his subjecting the children to invasive and unnecessary procedures, resulted in the British Medical Council subsequently finding him guilty of misconduct and in the Lancet withdrawing the paper.4 Nonetheless, in the interim Wakefield’s paper and related publicity generated a major backlash against the MMR vaccine in the UK.

(p.151) Like Duesberg, Wakefield made good use of the media to create skepticism toward mainstream science and to suggest that a genuine scientific debate was being oppressed. He accused the UK’s Department of Health of relegating “scientific issues to the bottom of the barrel in favor of winning a propaganda war.”5 In 2000 he took his battle to the United States, testifying in congressional hearings on the vaccine-autism link and appearing on the television program 60 Minutes to advise against the use of the triple vaccine.6 The following year, he moved to the United States, saying that the hostility toward him in England had become untenable. Echoing Mbeki’s objectification of the scientific community as part of a systemic “omnipotent apparatus,” he told journalists: “I realise now that everything that has happened to me was inevitable from the beginning. If you offend the system, then the system will take its revenge.”7 The media picked up the hint of conspiracy, and two years later a conspiratorial docudrama was aired on British television lionizing Wakefield and the parents of autistic children who support him—while suggesting that government officials had been plotting against him, stealing his files, tapping his phone, and so on.8

As with Duesberg’s case, Wakefield’s praise-singers contributed to his scientist-oppressed-by-the-establishment image. Journalist Justine Picardie reported on the “dark tales” she had heard about bugging devices and stolen records, and asked in a discourse laden with suspicion why “his supporters in the medical establishment fear speaking out openly on the issue” and why “so many parents of autistic children believe there has been a concerted cover-up of evidence suggesting a possible link between the vaccine and their children’s condition.” She observed that the conspiracy theories circulating around Wakefield may perhaps be no more than the “overheated product of too many viewings of Hollywood films,” but then added: “It’s not hard to imagine Russell Crowe playing Dr. Wakefield, opposite Julia Roberts as a feisty single mother fighting for justice for her child.”9 Melanie Phillips of London’s Daily Mail similarly represented him as a hero long after his theory that MMR caused autism had been disproved,10 and Lorraine Fraser of the Telegraph wrote a series of articles heroizing him for defying the “official wisdom” and “risking the wrath” of the US Department of Health.11 Neither questioned his evidence or seriously inquired as to why the medical establishment condemned him.

(p.152) A systematic review of the media coverage of MMR and its impact on public opinion concluded that mainstream medical science came off second best, in large part because the parents with their autistic children assumed the role of living icons:

many media reports gave voice to both sides in the ensuing debate about the safety of the vaccine. This was sometimes a debate between scientists and sometimes a debate between scientists or public health officials and concerned parents. The role of parents in this balancing act allowed anecdotal evidence from parents with autistic children to enter the discussion—which, while not authoritative as scientific evidence, is powerful rhetorically. Indeed scientists or public health officials cannot have relished debating people who not only command immediate public sympathy, but whose own children were, apparently, testimony to the risks involved with vaccination.12

Sensationalist coverage of the MMR story reached its height when Britain’s then prime minister, Tony Blair, refused to answer the question whether his young son, Leo, had had the triple vaccine. Given the widely reported New Age predilections of Blair’s wife, Cheri, it was all too easy for people to believe that Leo had not had the MMR vaccine. For example, Sylvia Caplin, who reportedly conducted “channeling” for Cheri Blair,13 condemned the “toxic” MMR vaccine for being “too much, too soon and in the wrong formula,”14 and Jack Temple, the Blair’s “douser and homeopathic healer” openly promoted an “energy-giving homeopathic alternative remedy” that supposedly eliminated the need for all vaccines.15

According to the media evaluation and impact study cited above, the importance of Blair’s position as prime minister was crucial:

For people confused about who to trust, this was an important indicator of the government’s faith in its own position. In a nutshell, was the government’s support for MMR deeply felt or merely tactical or strategic? Leo Blair might, therefore, be reasonably seen as a test of the government’s confidence in its own position. … If Leo Blair had been given the MMR vaccine, our findings suggest that the Prime Minister’s refusal to disclose this information (while understandable on a personal level) was, in public health terms, a mistake. It kept open the possibility that the Prime Minister had (p.153) reviewed the evidence and decided against the MMR jab, which can only have added to people’s fears.16

Although this episode of poor leadership is but a pale reflection of the mistakes made by President Mbeki, it stands as a further example of how leaders can undermine public health by raising, or even appearing to raise, doubts about mainstream science. Coverage of the Leo Blair story peaked in 2002. During this time, opinion polls reported that only about half of respondents said they would vaccinate their child with MMR.17 The proportion of children receiving the MMR vaccine dropped from over 90 percent to 70 percent and, in some areas of London, to 50 percent.18 Although uptake subsequently increased to 85 percent in 2010, this remains below the 92 percent level achieved before the MMR scare—and below that required for community immunity. Measles cases continue to rise.19

As was the case with AIDS denialism, many physicians and scientists were alarmed and angry—both by the quality of Wakefield’s work and his impact on vaccination rates. Immediately after the publication of Wakefield’s paper, the Lancet was flooded with letters from doctors, scientists, and public health officials angry that the journal had published such a potentially incendiary paper based on a very small number of cases. But the editor, Roger Horton, was unrepentant, retorting that there “is an unpleasant whiffof arrogance in this whole debate” and asking rhetorically, “can the public not be trusted with a controversial hypothesis?”20

There are some echoes here with the Medical Hypotheses saga, although in this case the issue was whether the paper had been reviewed adequately rather than whether it had been reviewed at all. Paul Offit, a pediatrician and vaccine scientist, criticized Horton for “ignoring the criticisms of several reviewers” and for “not anticipating the public reaction.”21 Other commentators were less restrained. Henry Miller, a molecular biologist and former official at the NIH and FDA accused Horton of making a “mockery of the peer review and publication process.” When Wakefield’s article was finally withdrawn in 2010, Miller editorialized on Forbes:

The Wakefield article caused incalculable damage by eliciting public skepticism about the safety of vaccines, which has caused plummeting vaccination rates in Europe and the US and a resurgence of cases of infectious (p.154) diseases that had become rare. Richard Horton, editor of The Lancet, denied any culpability, whining that Wakefield “deceived the journal.” Bollocks. A groundbreaking study that appears to be implausible and turns popular medical wisdom on its head needs to be done on more than 12 patients and an examination of the actual patient records.22

Horton argued that until Wakefield had been found guilty of misconduct twelve years later, he had no proof that Wakefield’s 1998 paper was deceptive.23 However, back in 2004, Brian Deer, an investigative journalist for the London Sunday Times, had told him about Wakefield’s conflict of interest issues involving at least five of the children in his study and that Wakefield had never received ethical clearance for the study.24 When this became known, ten of Wakefield’s twelve coauthors disassociated themselves from the paper. Yet the Lancet declined to withdraw the paper, even as further evidence accumulated showing no causal link between vaccines and autism25 and against Wakefield’s hypothesis that vaccines cause leaky guts and chronic infections.26

In the meantime, the paper lent legitimacy to those opposing the MMR vaccine and promoting alternative theories, some of them harmful treatments such as chelation therapy, testosterone ablation, and electric shock.27 Jenny McCarthy, the celebrity “activist mom” of the US vaccines-cause-autism movement, claims to have cured her son of autism28 and advises parents to ignore the negative messages from medical science and to “try everything”29 in their search for a cure. She heads an enterprise called Generation Rescue, which inter alia promotes her three best-selling books, and remains a strong supporter of Wakefield. When he was convicted of misconduct, she released a press statement saying that he had been tried by a “kangaroo court where public health officials in the pocket of vaccine makers served as judge and jury” and that he and parents of autistic children were being “subjected to a remarkable media campaign engineered by vaccine manufacturers.”30 Her use of the conspiracy trope to defend Wakefield is almost identical to that employed by AIDS denialists to defend Duesberg.

Wakefield refused to concede any wrong-doing. At the time of writing, he was still executive director of Thoughtful House, an American center (p.155) for treatment and research on autistic children which contests the scientific consensus on vaccine safety, insists that the idea that vaccines cause autism is still “on the table,” and promotes the use of single vaccines rather than combination vaccines like MMR.31 The key service appears to be colonos-copies, but in a discourse reminiscent of that of cultropreneurs, the center also provides “holistic” treatments for autistic children, including supporting so-called “detoxification pathways.”32

In sum, the role of dissident “hero scientist” is clearly symbolically important for the AIDS denialist and anti-vaccination movements. Precisely because the label “scientific” lends credibility to their claims, both Duesberg and Wakefield sought to publish in the “scientific” stable of journals. In the case of Duesberg, boundary work by HIV scientists and others resulted in the withdrawal of one of his papers and in the editorial policy of the journal being changed. In the case of Wakefield, the boundary work was slower and more institutionalized, but the result was more decisive: withdrawal of his paper and his disbarment from medical practice in the UK. In both cases, the papers were stripped of any imprimatur of science they once had—and in both cases their supporters blamed this on a corrupt and bullying scientific establishment. Yet they maintain a degree of social legitimacy, in part through the conspiratorial moves employed by their supporters to justify their marginalization, and in part because of broader public skepticism toward medical science and tolerance for alternative healing modalities. It is to this phenomenon—and the way that pro-science activists are increasingly challenging it—that we now turn.

Medical Mistrust and Alternative Medicine

The rise in popularity and respectability of alternative medicine is reflected in the evolution of popular discourse about it. What was once dubbed “pseudoscience,” “chicanery,” and “quackery” is now typically referred to as “alternative and complementary” or “holistic” therapy. Even the term health is making way in some contexts for wellness, partly to incorporate the number of non-biomedical and unproven interventions which are now accepted by (p.156) many as a necessary part of healing. Remedies and healing modalities that used to circulate on the countercultural fringe have become so widely used that they are now accepted as mainstream. This has blurred the boundaries between what used to be the “stigmatized knowledge domain” of the cultic milieu and conventional medical practice. It has also made boundary work in defense of evidence-based medicine increasingly challenging.

One of the reasons for public suspicion toward medical science has to do with the fact that a great deal of medical research is conducted in the private sector, where profitability and the drive for patentable drugs take center stage. Pharmaceutical companies have been known to provide incentives to doctors to encourage certain prescription practices, to abuse the patent law to prevent lower-cost competition, and to devote excessive resources toward developing and marketing “me too” drugs rather than searching for genuinely innovative interventions.33 They have also been known to bias the results of clinical trials—for example, testing a drug against inadequate doses of a competitor, using multiple end points and then selecting the ones that suit the desired outcomes best, presenting subgroup analyses when they produce desired results, and so on.34 Most notoriously, in the Vioxx trial, Merck researchers shortened the reporting period for adverse effects—notably heart attacks—but not for other outcomes and side effects for which Vioxx performed relatively well.35 When the Lancet published a meta-analysis showing that the unacceptable risks of Vioxx had been evident four years before the drug was withdrawn,36 an accompanying editorial castigated Merck and the regulators for acting out of “ruthless, short-sighted and irresponsible self-interest.”37 Understandably, such highly publicized events promote skepticism toward the pharmaceutical industry and fuels fears that biomedical drugs have not been properly tested and may actually cause serious harm.

There is clearly a range of serious issues here, which is why calls have been made for greater regulation of the marketing practices of pharmaceutical companies, for the publication of a clinical trial register, and greater transparency with regard to the conduct of clinical trials, analysis of data, and presentation of results.38 The key point, though, is that these problems do not warrant what science journalist Jon Cohen calls “pharmanoia,” i.e., that suspicious stance which “puts Big Pharma on a par with Big Tobacco” (p.157) and turns “shades of moral grey into black.”39 And it certainly does not justify the linked embrace of unscientific propositions. As Ben Goldacre complains, “‘Big Pharma is evil’ goes the line of reasoning, ‘therefore homeopathy works and the MMR vaccine causes autism.’ This is probably not helpful.”40

Modern forms of Boundary Work in Defense of Science

Because the rejection of medical science has adverse implications for public health—as evidenced by unnecessary AIDS deaths and declining vaccination rates—this cultural tolerance for alternative medicine has not gone unchallenged, especially in the Internet era. In the past, those wishing to explore the cultic milieu and related alternative lifestyles did so primarily by subscribing to print editions of alternative healing magazines such as Mothering—the magazine that featured a cover photograph of Christine Maggiore with “No AZT” emblazoned on her pregnant abdomen. Today, like many other fringe publications, Mothering no longer produces a print edition. Consumers of alternative health services now surf the Internet like everyone else. In so doing, they will encounter alternative websites by the dozen, but they will also come across anti–AIDS denial sites and advice from conventional medical practitioners. They will find sites telling them Maggiore’s daughter Eliza Jane died because a doctor gave her an antibiotic and that Maggiore died of stress—but they will also find information showing that both Eliza Jane and Maggiore died of AIDS. The Internet, in other words, is both a source of opportunity for cultropreneurs—and a site of danger for them as converts can easily be lost.

This determination to fight back and expose the dangers of denialism is evident also in the more conventional print media. For example, the popular magazine for science and reason, Skeptical Inquirer, which started off life investigating claims about UFO sightings, ghosts, psychic powers, and similar paranormal phenomena gradually found its focus shifting increasingly to exposing the claims of alternative healers.41 More recently, medical (p.158) professionals such as Goldacre, Kalichman, and Offit have penned popular books critiquing bad science, AIDS denialism, and the anti-vaccination movement.42 As such, they form part of a broader critical set of writings about the false claims and dangers of alternative medicine—for example, Dan Hurley’s exposé of the US vitamin and herbal supplement industry, Edzard Ernst and Simon Singh’s evaluation of the evidence for alternative therapies, and Michael Specter’s critique of denialism and irrational thinking.43 It is too early to tell whether this counteroffensive by pro-science advocates has achieved much success, but the fact that Goldacre and Singh have both been sued for libel (unsuccessfully) by alternative therapists suggests that some of their blows have hit home.44

The electronic media has proved to be a crucial mobilizing instrument for pro-science activists. Supporters of Simon Singh used Twitter and Facebook to keep abreast of the libel case, to organize events, and to lobby for reform of the UK’s libel laws. Both Goldacre and Kalichman operate blogs on topics linked to their books, and they are active within the broader community of pro-science Internet activists.45 Goldacre refers to the wider group of pro-science bloggers as “the posse” and posts links to them on his website.46 And their actions are not merely intellectual. When the British Chiropractic Association sued Singh, the posse flooded the association with complaints about individual chiropractors, all of which required investigation. For Goldacre, the lessons are clear:

First, if you have reputation and superficial plausibility more than evidence to support your activities, then it may be wise to keep under the radar, rather than start expensive fights. But more interestingly than that, a ragged band of bloggers from all walks of life has, to my mind, done a better job of subjecting an entire industry’s claims to meaningful, public, scientific scrutiny than the media, the industry itself, and even its own regulator. It’s strange this task has fallen to them, but I’m glad someone is doing it, and they do it very, very well indeed.47

In other words, boundary work in defense of science has not only adapted to the modern age by taking place online and with the help of electronic media, but it is being undertaken by members of the public. Whereas, in (p.159) the past, boundary work was conducted primarily by scholars seeking to develop and maintain public respect for science and to relegate “pseudosciences” like phrenology48 beyond the pale of academia, today the battle is more diffuse, public, and decentralized—indeed often fought at an individual level via cut-and-thrust debate on blog postings. As Goldacre suggests, it may be that this is more effective than action taken by the scientific community.

Damien Thompson is similarly optimistic, noting in his populist polemic Counterknowledge: How We Surrendered to Conspiracy Theories, Quack Medicine, Bogus Science and Fake History that high-profile alternative therapists have proved “surprisingly vulnerable to guerrilla attacks from the blogosphere”:

Freelance defenders of empirical truth, armed to the teeth with hard data, have mounted devastating ambushes on quacks and frauds who have ventured too far into the public domain. The tactic is an antiretroviral rather than a vaccine, and too modest in scope to effect dramatic change in society, but it does seem to work. … Reputations are easily damaged in a furiously competitive market, and people rather enjoy the spectacle of smug, rich lifestyle gurus being humiliated.49

This social phenomenon of “angry nerds” and “guerilla bloggers” dedicated to defending evidence-based medicine and challenging quackery is important. Rather than relying on the scientific community to defend the boundaries of science, we are seeing a much more socially embedded struggle over values and how we should be approaching our health and that of others.

Will this Popular Enlightenment Project Work?

Defending science is a quintessentially enlightenment project. It assumes that progress is possible through reason and the accumulation of evidence, and that the scientific method is persuasive and can be made more so. Those (p.160) who engage in the defense of science necessarily reject relativist approaches to the truth as unreasonable, defeatist, and dangerous. Thompson is particularly dismissive of those who have “turned their backs on the methodology that enables us to distinguish fact from fantasy” and concludes that it “will be their fault if the sleep of reason brings forth monsters.”50 Goldacre is similarly critical of “humanities graduates” for wearing their ignorance of science as a “badge of honour” while viewing scientists as “socially powerful, arbitrary, unelected authority figures.”51 In his view, this has had demonstrably adverse effects on public health because of the lack of trust in, or appreciation of, the evidence-based medicine it promotes.

Reasserting the enlightenment project of progress through reason and evidence is one thing. But whether such progress is possible remains an open question. How easy is it to persuade people through factual corrections of their misperceptions? The answer seems to depend a great deal on the individual. For example, AIDS denialists like Maggiore are impervious to corrective evidence about HIV science because they are, as Kalichman observes, in a psychological state of encapsulated delusion (chapter 6). They are impossible to argue with, and indeed it may even be counterproductive to do so. According to recent research in political psychology, providing people who are ideologically committed to a particular view with “preference-incongruent information” can “backfire” by causing them to support their original argument even more strongly.52 This could be because they misread or reinterpret the information to support their original position, or because they “counterargue” the information in their minds, thereby increasing their intellectual commitment to it.

The problem is, in part, a general one. Summarizing a substantial body of psychological literature, Brendan Nyhan and Jason Reifler note that humans are “goal-directed information processors who tend to evaluate information with a directional bias towards reinforcing their pre-existing views.”53 Farhad Manjoo, for similar reasons, worries that our tendency for “selective exposure” is resulting in reality “splitting” as we “choose our personal versions of truth by subscribing to the clutch of specialists we find agreeable and trustworthy.”54 He argues that the digital revolution has exacerbated the problem because now you can

(p.161) watch, listen to and read what you want, whenever you want; seek out and discuss, in exhaustive and insular detail, the kind of news that pleases you; and indulge your political, social or scientific theories, whether sophisticated or naïve, extremist or banal, grounded in reality or so far out you’re floating in an asteroid belt, among people who feel exactly the same way.55

Jodi Dean takes the argument even further, claiming that the Internet destroys “the illusion of the public by creating innumerable networks of connection and information,” which negates “any possibility of agreement” because “consensus reality” no longer exists.56 She argues that we cannot judge the rationality of people who believe they have been abducted by aliens and that we no longer have “widespread criteria for judgments about what is reasonable and what is not.”57

But while Manjoo and Dean are highlighting the ways in which the electronic media facilitates the growth of rival thought communities, their pessimism about the enlightenment project goes too far. As Michael Barkun points out, the boundary between mainstream and stigmatized knowledge domains may have become more “permeable,” but the world has yet to enter a state of “complete epistemological pluralism.”58 The fact that Duesberg and Wakefield keep trying to get the imprimatur of science for their discredited ideas speaks to the ongoing public prestige and power of science. Furthermore, their support base is far from fixed in stone. Whereas some people have become so committed to their unorthodox views that they cannot be moved from them—such as the hero scientists and living icons of the AIDS denialist and anti-vaccine movements—this is the exception rather than the rule for people dabbling in the cultic milieu. The cultic milieu may well be an oppositional subculture inherently suspicious of scientific practice and tolerant of mysticism and conspiracy theories, yet reason and judgment are not abandoned by all who enter it.

Indeed, as indicated by the correspondent on Kalichman’s blog (chapter 6) who described how Maggiore’s death from pneumonia started the process of getting him thinking that maybe he had been wrong in rejecting HIV science, people motivated to explore the cultic milieu are open to changing their minds. And, as the focus group of AIDS origin conspiracy (p.162) believers in Cape Town (chapter 2) also illustrated, seemingly strong endorsements of oppositional beliefs turn out to be more fluid and contingent when openly discussed. Similarly, the comments by prisoners about David Gilbert’s critique of AIDS conspiracy theory show that politically sensitive arguments that both acknowledge the reasonable basis for conspiracy beliefs while seeking also to correct them can result in people changing their minds (chapter 4).

To return to Colin Campbell’s seminal work on the cultic milieu, he stresses that this is not a cultural space where firm opinions are held, but it is rather a “society of seekers”:

Seekership is probably the one characteristic that all members of cultic groups have in common, and while this facilitates the formation of groups, it poses special problems for their maintenance. Seekers do not necessarily cease seeking when a revealed truth is offered to them, nor do they necessarily stop looking in other directions when one path is indicated as the path to the truth.59

This, in turn, creates the space for pro-science activists to compete for the attention of those seeking information about health and healing. By doing this in the electronic world, through dedicated websites and blogs, and by posting comments in response to claims by cultropreneurs, the Internet becomes a tougher place for people to sequestrate themselves in a comfortable cocoon of the like-minded. These days, a “google search,” the modern-day equivalent of practical seekership, catapults one from AIDS denialist to pro-science activist websites, and exposes a person to news (like Maggiore’s death) which sites like Alive and Well prefer to downplay, if not hide.

This is good news for the enlightenment project. As Nyhan and Reifler note in their review of the psychological literature, people may be biased in favor of interpretations that align with their prior prejudices and suppositions—but this does not mean that they just believe what they like and never accept counter-attitudinal information. Nyhan and Reifler cite early studies showing that when faced with “information of sufficient quantity or clarity,” people do change their minds,60 and their own research backs this up.61

(p.163) The challenge for the pro-science advocacy movement is thus to keep an active and credible presence on the Internet, both with regard to exposing the cultropreneurs and promoting evidence-based medicine. In so doing, they need to educate people about the power of science while also acknowledging that scientific practice is contested, socially structured, and can be biased and shoddy (as Merck’s Vioxx study and Wakefield’s research illustrates). Recognizing and exposing the limitations of science not only builds credibility by acknowledging reasonable concerns, but assists the broader project of promoting good science.

The Internet is an anarchic space where popular forms of boundary work in defense of science range from ridicule and banter to serious discussion about scientific findings along with URLs to scientific articles and reports. It looks, in other words, like the varied countercultural, seeking space that used to be the preserve only of the cultic milieu—but with greater informational depth. The weapons of science and reason are still very much in contention, both within the scientific community and in this creative popular space. (p.164)

Notes:

(p.190) (3.) Ibid

(4.) Boseley (2010). Subsequent reports suggest that some of Wakefield’s data was misreported to the point of being fraudulent (Deer 2011).

(8.) For a biting review of the film, see Aaronovitch (2003).

(15.) “Cherie Health Guru Who Believes MMR Jab Is Unnecessary,” Daily Mail (London), Dec. 26, 2001.

(17.) Ibid., 44

(20.) Horton, quoted in Offit (2008:58).

(24.) Brian Deer’s research on the topic is available at http://briandeer.com/wakefield-deer.htm.

(25.) Institute of Medicine (IOM 2004).

(27.) Ibid., xvii–xviii

(29.) Cited in Greenveld (2010).

(36.) Jüni et al. (2005).

(38.) See, for example, Angell (2005) and Goldacre (2008).

(44.) Goldacre was sued by Mattias Rath, the multinational cultropreneur who runs the Rath Health Foundation and claims that his expensive vitamins cure many illnesses including AIDS, bird flu, and cancer. Rath is notorious for conducting illegal “trials” in Khayelitsha in which AIDS patients were encouraged to go off antiretrovirals and onto his high-dose vitamin regimen instead (chapters 5 and 6). Fortunately, Goldacre could rely on the Guardian to cover the costs of the trial, which was finally resolved in his favor. Singh, however, was sued in his individual capacity by the British Chiropractic Association for saying that they happily promoted “bogus” therapies. He had to rely on public support for his cause, but fortunately, like Goldacre, ultimately proved successful.

(45.) These include the group of physicians who participate in a website called “Science-Based Medicine” because they have become “alarmed at the manner in which unscientific and pseudoscientific health care ideas have increasingly infiltrated academic medicine and medicine at large” (www.sciencebasedmedicine.org), academics like Tara Smith (an epidemiologist), who runs the blog “Aetiology” (http://scienceblogs.com/aetiology), and David Colquhoun (pharmacologist), who publishes “Improbable Science” (www.dcscience.net). Other active and informed bloggers with a scientific background include “Orac,” who runs “Respectful Insolence” (http://scienceblogs.com/insolence), and “Gimpy” (http://gimpyblog.wordpress.com). Other sites are dedicated purely to warning people about quackery (notably, www.quackometer.net and www.quackwatch.org).

(46.) The posse can be found listed at www.badscience.net/index.php?s=posse.

(p.192) (50.) Ibid., 138–39

(53.) Ibid., 307

(55.) Ibid., 2

(57.) Ibid., 9

(61.) Nyhan and Reifler found that, whereas in 2005 those who supported George W. Bush were more likely to believe that Iraq had weapons of mass destruction after being presented with evidence that it did not (the “backfire” effect of corrective information), in 2006 this effect had disappeared. They suggest that this had to do with broader public acceptance of the fact that Iraq did not have weapons of mass destruction (2010:311–317).