When Science and Values Collide: Recalling the Lessons of Evidence-Based HIV Prevention
Although terminology espousing “evidence-based” approaches to the practice of medicine and of public health is a relatively recent contribution to the scientific lexicon [1, 2], recognition of the importance of basing actions to improve health outcomes on sound evidence, rather than relying on subjective beliefs and long-standing traditions, extends back centuries. Nearly 400 years ago, Sir Francis Bacon, often acknowledged as the father of inductive reasoning and a major proponent of the scientific method, cautioned that “confirming and rendering inveterate” past errors was “more hurtful” than “searching after the truth” . Rather than stagnate, Bacon affirmed that the arts and sciences must evolve and that they “should resound…with new works and advances” .
New information, whether arising from emerging trends in HIV incidence, qualitative observations acquired from community stakeholders or demonstration projects evaluating innovative prevention strategies, has resulted in successive improvements in our response to combatting HIV. A retrospective review of HIV prevention efforts in the United States provides ample evidence of how advances in behavioral and biomedical science have driven improvements in the content and focus of HIV prevention efforts over the past decades . Consider early efforts to decrease the sexual transmission of HIV that relied primarily on the provision of basic information about the mechanics of HIV transmission, usually delivered in a didactic manner (so called “AIDS 101” education). Compare those initial prevention responses to subsequent approaches, informed by theory and evidence, that tested interventions based on theoretically derived models of behavior change, delivered by engaging the social networks of vulnerable populations . Or reckon how randomized controlled trials have demonstrated the efficacy of pre-exposure prophylaxis (PrEP) in preventing HIV infection among men who have sex with men  as well as heterosexual men and women ; if brought to scale and provided in tandem with other effective HIV prevention methods, there is little doubt that PrEP could substantially reduce the number of new HIV infections among at-risk populations .
For those of us who focus our research, teaching and practice on effective, evidence-based strategies to prevent HIV infection and its negative sequelae, there is no question that an ever-expanding knowledge base across a variety of scientific and technical disciplines has the potential to continually improve health outcomes for populations at risk for or living with HIV. But knowledge doesn’t exist in a void and we cannot ignore the fact that subjective experiences and opinions, including values and belief systems, can radically alter the way that knowledge is gathered, interpreted and subsequently acted upon.
The history of HIV prevention includes notable examples of scientifically sound, evidence-based prevention approaches that have been minimized—or in some instances, even sidelined—because of strong, countervailing negative attitudes and values. Access to sterile injection equipment for people who inject drugs (PWID) is perhaps the most obvious example. Despite cumulative evidence of HIV prevention effectiveness, concerns about the appearance of endorsing or promoting the practice of substance use have resulted in legislative bans against the use of federal funds to support access to sterile injection equipment as a necessary component of comprehensive HIV prevention among PWID [4, 9]. It took an outbreak of HIV in rural Indiana in 2015, among persons sharing syringes to inject the prescription opioid oxymorphone [10, 11], to induce Congress to pass a partial repeal of the ban prohibiting the use of federal funds to support needle and syringe exchange programs  (federal funds still cannot be used to purchase sterile needles and syringes, but can be used to support other programmatic components of needle exchange programs—in areas that can document that they’re experiencing or are at risk for an outbreak of viral hepatitis or HIV related to injection drug use).
A look at early efforts to promote safer sexual behaviors among gay and other men who have sex with men (MSM) provides additional documentation of how evidence and values can clash, to the detriment of health outcomes. Years prior to the onset of AIDS in America, several accepted theories of human behavior change recognized the importance of social influence on the adoption of new behaviors and posited that the credibility of both the message and the messenger could affect the success of efforts to modify behaviors . In terms of reaching sexually active MSM with information about how to prevent the transmission of HIV, extant theoretical constructs should logically have directed prevention specialists to talk frankly about the range of human sexual practices—in language that would be understood, and accepted, by the very individuals for whom the information was intended. Instead, during those early years, structural stigma against homosexuality—which was widespread and in many instances supported by state laws—restricted the ways in which prevention messages were communicated to at-risk communities. In fact, it wasn’t until 2003, some 22 years after AIDS was first reported, that the U.S. Supreme Court ruled that criminalizing intimate sexual contact between two consenting adults of the same sex was unconstitutional—overturning previous rulings that had upheld state laws on sodomy .
Negative values about homosexuality (and, for that matter, injection drug use) may help explain the Congressional Office of Technology’s (OTA) 1985 finding that federal efforts to educate high risk groups about AIDS was left “largely up to the leadership of the groups themselves” and that “brochures designed by gay organizations have provided much more explicit and practical advice on the relative safety of various sexual practices” than those developed by the US Public Health Service . OTA opined that “one reason” for organized public health’s failure to provide adequate risk reduction information to MSM and PWID might be because “providing advice on preventive practices may be viewed as condoning bisexuality, homosexuality, or intravenous drug abuse” . OTA’s supposition gained further credibility some 2 years later when the U.S. Congress passed an amendment that prohibited the use of federal funds for any AIDS educational materials that “promote or encourage, directly or indirectly, homosexual sexual activities” . Although the original Helms Amendment was replaced a year later with a somewhat more permissive amendment that prohibited federal funding for materials “designed to promote or encourage directly” IV drug use, or homosexual or heterosexual activity , concerns about the use of federal funds to support sexually explicit (and sexually affirmative) risk reduction programs for gay and bisexual men continued into the third decade of the American AIDS epidemic .
Reflecting on the ways in which values can shape research priorities, influence the interpretation of scientific findings or impact the uptake of discoveries into policy and practice seems especially relevant in today’s climate of increasing skepticism of institutions, expert opinion and, in some instances, established fact itself. Although the Pew Research Center reports that “public confidence in the scientific community and in medicine is higher than in many other institutions,” it is worth noting that less than half (40%) of all Americans surveyed “have a great deal of confidence in the scientific community”; trust in the organizations that report scientific findings to the public at large and in the elected officials responsible for acting on evidence to improve the health of America’s citizens, is even lower .
A previous opinion piece offered in this journal asserted that investigators should “engage in, support, and promote efforts that help to ensure that their empirical work is translated into policies and programs” . Very true. However, stated in generic terms, and underscored by the HIV-related examples provided above, the facts alone don’t always have the effects we might hope for. Simply put, knowledge, alone, rarely changes behavior. That reality holds true whether we’re talking about sexually active gay men whose behaviors place them at risk for acquiring HIV or legislators who are empowered to make decisions about policies and budgets that can affect HIV health outcomes. Anyone who is committed to improving health, whether researcher, teacher or practitioner, must recognize that context, including values and beliefs, will influence the acceptance and uptake of new information  and acknowledge their responsibility to help educate and empower stakeholders to use new information in timely and constructive ways.
When it comes to implementing new evidence to improve health outcomes, many stakeholder voices can be heard, for example: the scientists whose work resulted in the evidence, the legislators and policy makers who will be asked to make decisions relevant to the evidence, and the general public who have an interest in how resources are prioritized and allocated. Ironically, a critical perspective that is often overlooked comes from those very populations who will “potentially receive, use and benefit from the program or policy being considered” . In the HIV prevention examples cited above and other instances of population health disparities, imbalances in power between the actors and the acted-upon are often at the heart of this seeming “silence.” In fact, more recent analyses of the root causes of population health disparities have identified “social disadvantage” as an important driver and reinforcer of these disparate outcomes . Because of their “relative position in social hierarchies” , groups that are socially disadvantaged (e.g., PWID, sexual and gender minorities, racial/ethnic minorities, and those living in poverty) often do not have access to the resources necessary to achieve and maintain health—including the ability to directly shape the policies, laws and practices that affect their lives and health.
Understandably, those of us who’ve pursued careers in which scientific information and other sources of robust data are recognized and accepted as critical components may consider subjective reactions to “good science” as bothersome distractions which minimize the importance of the essential facts. But in the examples cited above, values which deemed same sex behavior and injection drug use as moral failings did, in fact, impede the timely implementation of evidence-based approaches to HIV prevention among MSM and PWID. Yet, these same examples can also be used to demonstrate how vulnerable communities, when mobilized to bring their own needs, preferences and values to the fore, can bring about positive change. Remember the rallying slogan of Act Up? It was Silence = Death.
There are many lessons that our interaction with HIV has taught us but among the most valuable is that empowered communities can generate changes that will support their members in achieving and sustaining better health. In both instances noted above (i.e., access to sterile injection equipment for PWID and health education materials that reflect the specific needs and preferences of sexually active MSM), community advocates worked with tireless determination alongside other allies to bring about changes in existing legal restrictions [9, 22]. Coalitions of individuals, groups and organizations who were deeply committed to improving health outcomes for people at risk for or living with HIV were thus able to harness evidence and add their voices—and values—to the dialogue about how best to address the epidemic in their own communities. Whether through legislative advocacy, outreach to and education of opinion leaders, or a fundamental willingness to share deeply personal information about the individual consequences of unchecked HIV, the work of these coalitions provides tangible proof that it is possible to move beyond conflict and disagreement, even when science and values collide. But to do so requires that we listen carefully to the voices of all relevant stakeholders—especially those who bear the burden of disease.
At this moment in time when so much of our public discourse is dominated by what is truth and what is not, it is useful to remember these hard-won lessons from our decades of experience with HIV. Evidence is critical for action. What we do as a society in response to health and social problems must be informed by the best available information. When that information is lacking, it is incumbent that we take steps to gather the needed data, resisting the urge to base our actions on subjective beliefs, individual opinions and time-worn responses. And while it is neigh impossible for any of us to completely remove our own values from the interpretation of “facts,” when attempting to improve health outcomes or to address other pressing social problems, we must give preference to the values and lived experiences of those persons whose health and unmet needs we are attempting to improve, for these, too, are critical sources of evidence. Bringing these lessons to mind provides a workable model for how to achieve equipoise between the competing domains of the objective and the subjective that inevitably attend any complex health issue, like HIV.
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