Module 3: Medical Rumors in North America

Potentially harmful rumors regarding critical medicines and treatments are not unique to developing countries.  The United States has seen misconceptions regarding vaccinations, HIV/AIDS, and methods of birth control – each case demonstrating common human reactions of fear, anger, and uncertainty.  Although feelings of hurt and anxiety can be allayed, the ultimate consequence of harmful misconceptions has been the loss of public trust in science.  These case studies provide further insight into the consequences of rumors and the power of personal anecdotes.

Vaccine-Autism Wars

From studies in epidemiology, we have long known of the benefits of vaccination campaigns, particularly the concept of “herd immunity,” in which the immunization of a critical portion of a community against a contagious disease diminishes the possibility of outbreak and protects most members of the community.(1)  Yet, to the dismay of public health officials, one controversy that has rung particularly loudly in the past decade has circulated around the administration of vaccines (particularly Measles, Mumps, and Rubella, known as “MMR”) to children.  Given the proven success of vaccinations, health officials have been troubled to find public resistance to life-saving preventive measures to be rooted in medical rumors and misconception toward evidence-based findings.

It all began in 1997, when a provision for the U.S Food and Drug Administration to measure mercury levels in products set in motion investigations by leading vaccine experts to evaluate the possibility that mercury in vaccines posed health risks for children.  After finding ethylmercury to exceed safety guidelines, albeit with unknown toxicity on the developing brain, the Center for Disease Control (CDC) and American Academy of Pediatrics (AAP) were advised to remove thimerosal from vaccines “as a precautionary measure and to maintain public confidence in vaccine safety.”(2)  Although the AAP prepared for public reaction by releasing a statement that current levels were not known to hurt children and a reduction in level would make vaccines even safer, a seed was planted in the public mind to question the safety of vaccines.

Combined with increasing autism rates that had been on the rise since the 1980s, the “expanded vaccine schedule” that now increased child vaccinations from seven to fourteen before the age of two, and changing “contemporary attitudes toward environmental risk,” the scene was set for conflict.(3)  When parents began to file complaints for their children with autism, claiming onset due to the only environmental factor that had changed – the administration of vaccines, concern for the safety of their children began to cause parents “to adopt alternative [vaccination] schedules or seek exemptions to avoid vaccination.”(4)

In response to this public opposition, the Institute of Medicine (IOM) convened a panel to investigate any potential links between vaccines and autism, and determined unanimously that there was no evidence of causation between MMR or thimerosal and autism.  When scientific institutions considered the issue resolved, they recommended the diversion of funds to other research.  This action led anti-vaccine activists to discredit the IOM and criticize them for lacking concern for children affected by autism.  Taking insult, activists began to target public institutions and scientists alike, latching onto any cases that supported the belief that vaccines caused autism, whether evidence was available or not.  Outspoken parents and celebrities began to vocalize their criticisms of vaccines and used personal anecdotes to gather support from other families who had gone through similar experiences.

At this time, scientific institutions began to see the power of the personal anecdote.  “People relate much more to a dramatic story – ‘he got his vaccination, he stopped interacting, and he hasn’t been the same since’ – than they do to facts, risk analyses, and statistical studies,” says Rachel Casiday, a medical anthropologist in the UK.(5)  Parents were more likely to hear the story of Jenny McCarthy’s son and find emotional, psychological support off of which they could base their own experiences.  The escalation of support groups and organizations founded by activist parents was a signal to scientists to learn to understand the importance of the narrative.

Yet, the problem in conflicts between scientific institution and laypeople is not limited to how to communicate the proper understanding of risk.  As in this case between healthcare providers and parents of autistic children, the problem is one of broken trust between patients and experts.  If people think protective institutions have failed, they will collect their own research, which is often not based on scientific evidence.  See below, for information on The Dangers of the Internet.  In this reallocation of trust, people may find external support, persuading others to their viewpoint and convincing more parents to distrust the significance of vaccinations.

Conspiracy Beliefs about HIV/AIDS and Birth Control

The Centers for Disease Control and Prevention (CDC) reports that African Americans are significantly more impacted by HIV/AIDS, STIs, and unintended pregnancies than any other population in the US, including Hispanics and Whites.  What factors are causing this wide discrepancy?  Why aren’t these problems being as successfully prevented in this specific population?  According to the journal article “Conspiracy Beliefs About HIV/AIDS and Birth Control Among African Americans: Implications for the Prevention of HIV, Other STIs, and Unintended Pregnancy" written by Bird and Bogard, one possible answer is the existence of conspiracy beliefs suggesting “HIV is a manmade virus” and “the government is trying to limit the Black population by encouraging the use of condoms.”(6)

The greater prevalence of these beliefs among African Americans has been demonstrated by research on HIV prevention.  In a study conducted by Herek and Glunt, telephone surveys of a random sample showed that two-thirds of blacks in comparison to only one-third of whites believed that the government was not “telling the whole story” about AIDS.  In a 1994 study by Herek and Capitanio, it was found through telephone surveys that 20% of blacks agreed with the statement, “the government is using AIDs as a way of killing off minority groups,” while only 4% of whites agreed with this.  Those who endorsed the idea were found to be less educated and of lower socioeconomic status.  A 1999 study by Klonoff and Landrine used door-to-door surveys of middle and working class African-American adults living in San Bernardino County, California.  Results revealed that 14% of people agreed, and 12% “somewhat agreed” with the declaration stating “HIV/AIDS is a manmade virus that the federal government made to kill and wipe out Black people.”  This idea was reported to be more frequently supported by those who perceived frequent discrimination in their life.  In this study, those with higher education levels were actually more likely to endorse the inaccurate statement.(7)

Bird and Bogard explain that the implications of these conspiracy theories were investigated.  The aim was to examine how HIV/AIDS and birth control conspiracy beliefs influence sexual behaviors and attitudes among African Americans.  Two categories of HIV/AIDS conspiracies were observed, including “beliefs about the government's role in the AIDS epidemic (e.g., ‘AIDS is a form of genocide against African Americans’), and beliefs about the efficacy of new treatments for HIV (e.g., ‘the medicine that doctors prescribe to treat HIV is poison’).”(8)  Overall, a concerning amount of solid support was found for many of the false statements.  For example, 53% believed that “there is a cure for AIDS, but it is being withheld from the poor,” and 70% believed that in general, “a lot of information about AIDS is being held back from the public.”  Belief in the “HIV government conspiracies” generally led to a decrease in condom use and an increase in sexual partners, implying that suspicion of the government causes trust in public health messages to decline.  In contrast, a belief in “HIV/AIDS treatment conspiracies” led to an increase in condom use, perhaps because fear of new HIV treatments made people more determined to avoid them.(9)

In the 1990’s, new birth control technologies such as Norplant were widely promoted as potential solutions for overpopulation and poverty, and some policymakers “incorrectly associated such social problems exclusively with African Americans.”(10)  Rumors spread that minority females throughout the U.S. would be required to have Norplant implanted, and a version of this rumor even connected Norplant to a genocide scheme.  A survey conducted by Parsons et. al. (1999) in Louisiana revealed that over a quarter of the population endorsed the notion that family planning programs are a variation of genocide.  Even though this sample was extremely narrow (consisting entirely of church parishioners from the same state), it shows the existence of support for birth control conspiracy theories.  Overall, the research has shown that birth control conspiracy endorsement is linked to views and practices of contraception.  For example, those who supported the statement “medical and public health institutions use poor and minority people as guinea pigs to try out new birth control methods” were more likely to be using condoms for contraception as opposed to newer methods.  Also, it was found that endorsements of statements such as “birth control is a form of black genocide” reduced tendencies to use birth control pills.(11)

There has been an extensive history of discrimination towards African-Americans in the United States, including unequal treatment from the government and health care system.  In fact, 98% of the population has reported experiencing discrimination based on race in their lifetime, and an African-American community sample in Ohio reported racial discrimination in the healthcare context.(12)  Perceptions about racism in the healthcare system lead to a mistrust of medicine, a context that is a dangerous breeding ground for rumors.  According to social psychology models, cognitive expectancies regarding an individual’s sickness and treatment significantly influence health behaviors and therefore affect ultimate health outcomes.  “An expectancy is any belief, hypothesis, theory, assumption, or accessible construct that is brought from previous experience and used, either consciously or unconsciously, as a basis for interpreting or generating behavior in the present context…conspiracy beliefs about HIV/AIDS and birth control are impersonal expectancies that may play a major role in HIV, STI, and pregnancy prevention behavior and attitudes.”(13)  In order to overcome these widespread beliefs, it is essential that intervention programs are adjusted for each culture and implemented by highly-regarded community members.  There is also a need for conspiracies to be straightforwardly addressed and honestly discussed in order to dispel the rumors and successfully deliver health care services.

Misinformation about Birth Control

Mistaken beliefs about hormonal contraception are widespread.  There have been documented apprehensions about contraception, claiming that it “stunts growth, causes infertility, and contains harmful chemicals,” in addition to worries that OCs would not dissolve and that IUDs could “strangle the fetus.”  Women frequently do not mention any of the correct health risks connected to the contraceptives.(14)

In a study of low-income Latina adolescents, views and feelings on contraceptive side effects were examined.  Focus-group conversations with young Latino women were conducted in the community, and the results were qualitatively analyzed.  The study found that females used invalid information when making decisions about contraception, and they frequently referenced stories and anecdotes that they had heard through word of mouth.  Those rumors were regarded with greater respect and importance than information provided by doctors.  All of these issues led to dependence on ineffective contraception techniques, putting individuals at greater risk for unintended pregnancies.  The greatest hindrances to effective contraception in these young, low-income Latinas were “concern about side effects, fear of health consequences, and misinformation.”  Another challenge to contraception use is weak patient-physician connections and communications.  Women generally deferred to friends and family when seeking medical advice instead of asking a doctor, and some of the misinformation was reported as having been obtained from conversations with healthcare professionals.  While it is possible that information was mistakenly provided, it is more likely that the facts were poorly communicated and therefore misunderstood.  This issue requires immediate attention, as the miscommunication could possibly be attributed to “poor health literacy, language barriers, or poor recall, all of which have been associated with trouble complying with contraception.”  Studies have shown that high rates of pregnancy in this population are linked to low education and poor health outcome for both mother and child.  In order to overcome the spreading of misinformation, it is important that health systems promote open communication, counseling of anxieties and fears, and sensitivity to all cultural backgrounds.(15)

The Dangers of the Internet 

The widespread method of posting health information on the Internet presents a rapid and easy way to circulate invalid medical rumors.  On the Internet, anyone can post anything.  For example, the risks of certain medications or the effects of some foods can be reported online by any person with computer access.  A major concern with such freedom of speech is that scientific, evidence-based knowledge becomes just another opinion.(16)  Given the vast amount of information on the Internet, individuals may find support for any perspective of thought.

With current technology, an individual with a health question will often search (or “Google”) the subject of interest and assume the facts they read to be true.  Also, “public access to internet preprints of medical studies might lead some people to use the wrong medications or to stop taking needed treatment on the basis of inadequate information, as has happened from time to time when news reports failed to adequately interpret a presentation at a medical meeting.”(17)  The Internet can serve as a valuable tool when used correctly, but it is important to ensure that the information is coming from a valid source so that false rumors do not spread.  

Conclusion

With easy access to vast supplies of information, the potential for rumors, conspiracies, and misconceptions is immense in North America.  By perpetuating false information, society inevitably suffers from poor health consequences and an erosion of public trust in science.  In order to overcome these challenges, it is imperative that health programs build trust and maintain open communication between patients and the medical and scientific community to ensure that information is coming from a reliable source.

Footnotes

(1) National Institute of Allergy and Infectious Diseases. Community Immunity (“Herd” Immunity).

(2) Gross, L. 2009. A Broken Trust: Lessons from the Vaccine–Autism Wars. PLoS Biol 7(5): e1000114. 

(3) Ibid.

(4) Ibid.

(5) Ibid.

(6) Bird, S. & Bogard, L.  “Conspiracy Beliefs About HIV/AIDS and Birth Control Among African Americans: Implications for the Prevention of HIV, Other STIs, and Unintended Pregnancy.”  Journal of Social Issues, Vol 61, No. 1, pp 109 – 126 (2005). 

(7) Ibid.

(8) Ibid.

(9) Ibid.

(10) Ibid.

(11) Ibid.

(12) Ibid.

(13) Ibid.

(14) Gilliam et. al.  “Concerns about contraceptive side effects among young Latinas: a focus-group approach.”  Contraception, 70, 299-305, (2004). 

(15) Ibid.

(16) Gross, L. 2009. A Broken Trust: Lessons from the Vaccine–Autism Wars. PLoS Biol 7(5): e1000114.

(17) Kassirer, J. and Angell, M.  “The Internet and the Journal.” The New England Journal of Medicine, Vol. 332: 1709-1710, No. 25, (22 June 1995).