HIV Conspiracy Theory Belief or Institutional Mistrust? A Call for Disentangling Key Concepts

Abstract

Researchers studying the mental health implications of HIV continue to conflate institutional mistrust (i.e., medical and/or governmental) with HIV conspiracy theory belief despite a multitude of existing scales that measure both independently. Although this conflation is made frequently, measuring for HIV conspiracy theory belief in select (largely black) populations while choosing to forgo a scale for the assessment of institutional mistrust is likewise a fairly common practice. Therefore, research done on the prevalence of HIV conspiracy theories in black populations ought to be scrutinized for bias. By doing so, the differences and similarities of these phenomena would be clarified and perhaps the way could be paved for a new HIV conspiracy theory belief scale that factors in the Internet's profound effect on conspiracy theory dissemination while ensuring the ethical practice of HIV-related research in the future.

In light of medical advances in HIV prevention and treatment, does the belief in HIV conspiracy theories still directly influence antiretroviral therapy adherence, rates of pre-exposure prophylaxis (PrEP) uptake, as well as other HIV prevention efforts? In short, yes. Based on an examination of various studies from the past 20 years, one could assert that HIV conspiracy theories and core AIDS denialism tenets have a sturdy foothold in American society today with pronounced effects in some populations over others.^1,2 In fact, the endorsement of HIV conspiracy theories from Nipsey Hussle, an American Grammy-nominated rapper, which re-emerged amidst the various media coverage after his untimely death, serves as an unfortunate reminder of the pervasive nature of such beliefs even among the mainstream.³ However, although leaps and bounds have been made in the study of HIV treatment and the virus's psychological and social implications across the globe for the past decades, the means by which researchers measure HIV conspiracy theory belief in the United States (HIV is a man-made virus, a cure for HIV exists and is being withheld from the public, HIV was created in a government laboratory, etc.) have largely not been validated nor critically re-examined to assess for potential bias.¹

Individuals living with HIV come from diverse backgrounds and face unique psychosocial stressors that may or may not exist independently of their HIV-positive status.⁴ Although there has been a nationwide decrease in HIV diagnoses since 2010, there have also been spikes in diagnoses within black and Latinx populations, indicative of what some presume to be a lack of awareness regarding prevention measures such as PrEP, postexposure prophylaxis, and treatment as prevention (i.e., undetectable status and viral suppression).⁵ Individuals belonging to this population are likewise more disposed to encounter social stigma as it may relate to their HIV-positive status, as well as face more frequent barriers to the HIV care continuum.⁶

Past and recent studies on the effects of HIV conspiracy theory beliefs largely target black men—black sexual minority men in particular; the former is a population that has historically been subjected to unethical treatment in the name of research (as with the Tuskegee syphilis experiment).⁷ Arguably, transgenerational trauma from years of subjugation has shown to have an association with institutional mistrust and HIV conspiracy theory endorsement today.⁵ Yet therein lies the crux of the problematic underpinning of past and current research on this particular topic. HIV conspiracy theory belief and institutional mistrust are terms that are often conflated even though separate scales exist to measure both independently (the LaVeist Medical Mistrust Index, the Hoofnagle AIDS Denialism Scale, the Bogart and Thorburn HIV Conspiracy Theory Belief Scale, etc.).^1,2,8 Moreover, although some studies on institutional mistrust—as it pertains to HIV—include conspiracy theory belief as a subscale or a cluster of individual items, some researchers have opted for HIV conspiracy theory scales without measuring for the broader phenomenon of institutional mistrust.⁹ This observation, therefore, begs the question: Why are the terms and scales used interchangeably and what inferences could be made from this conflation?

Espousing conspiracy theory beliefs (irrespective of those concerning HIV) has been shown to have an association with social stigma and exclusion.¹⁰ As this is the case, one should consider that measuring conspiracy theory belief while neglecting to test for institutional mistrust—the core views of which are not met with stigma—among a historically disenfranchised and maltreated population might also delegitimize this population's wholly valid concern. Moreover, this practice also reinforces the aforementioned social stigma by depicting a select population as inherently prone to conspiracy theory ideation without explicitly demonstrating that there may be a real-life precedent and psychological basis for this belief.

The United States is currently experiencing a dynamic shift in the relationship between purveyors of information (news outlets, intelligence services, health services, etc.) and its consumers—in how said information is parsed, trusted, or flatly disavowed based on a variety of factors and influences. With the Trump administration's outright denial of facts, distortion of difficult truths, as well as the total fabrication of information (whether those be false data from fictitious research, or a revisionist understanding of basic history), clarifying the distinction between the espousal of HIV conspiracy theories and institutional mistrust is particularly salient today.¹¹ A straightforward content analysis of Internet-based discussion forums would help in distinguishing the points of difference and similarity between the phenomena while also helping the academic community (and society at large) understand whether HIV conspiracy theories and belief indicative of institutional mistrust are more prevalent in the United States since President Trump took office. Yet no such research exists at this point in time.

Rather, the case may also be made that despite the Trump administration's incongruous messaging regarding eradicating HIV in the United States by 2030, the concept of “getting to zero,” in terms of HIV deaths, is more attainable now than ever before.^12,13 Instead of waiting for a study to be done such as the one described to demonstrate the need for this clarification today, researchers ought to determine the reasons behind the choice of scale for their study in any future research as it may be related to HIV conspiracy theory or institutional mistrust in black populations. By doing so, they would acknowledge and give space to the social determinants of health and shed light on the inequity associated with HIV prevention and treatment, as it exists along ethnic and socioeconomic lines. Furthermore, they would combat forms of structural racism, as they exist in the field of human subjects research today.

When considering that HIV conspiracy theories originated decades ago and have found future life on the Internet, perhaps an altogether new scale ought to be made that can best measure HIV conspiracy theory belief and institutional mistrust as phenomena that exist alongside one another (and at times as moderators of each other) in particular social contexts. Through the development of scale items that touch on both of these belief systems, the stigma associated with the former may possibly be mitigated. As a result, prevention efforts in the form of HIV/AIDS education could be implemented in ways tailored for distinct communities while also giving space for the expression of beliefs that—although highly problematic—are rooted in the very history of the United States.

Author Disclosure Statement

No competing financial interests exist.