“Must a name mean something?” Alice asked Humpty Dumpty in Lewis Carroll’s Through the Looking Glass published in 1871. More than a century later, the federal DHHS has just decided to recommend that certain words be omitted from budget documents written by the Centers for Disease Control (CDC). Two of these targeted terms are science-based and evidence-based, and the Trump Administration’s preferred phrase is “science in consideration with community standards and wishes” (1).
Problematically, community standards and wishes have often been based entirely on superstition. In some East African countries, a superstition has led to the murder of children afflicted with Albinism (based on the belief that possessing their bones confers health to the owner!). In 2016, at least 18 Albino people were murdered in Malawi due to this superstition (2). Meanwhile, due a misguided fear of a link to autism, there has been increased parental refusal to immunize children from contagious childhood diseases in the US, resulting in periodic outbreaks that particularly infect youth with weak immune systems (e.g., cancer survivors) (3).
Writing and word usage are well-recognized to influence societal perceptions, as evidenced by Lewis Carroll’s satirical and popular rendering of the political circumstances of his time. Furthermore, dictators understand that words can be powerful—which is why censorship is so widely-practiced in nations that do not have democratic forms of government. Indeed, Russia, China, North Korea, Iran, and Saudi Arabia all censor what can be written (and read) by their citizens.
The Inherent Danger of Abiding by Community Preferences in Scientific Studies
The DHSS recommendation to the CDC that scientific endeavors should consider community standards and wishes really is an ominous political development. There are just too many historical examples of the irrationality of community standards and wishes.
Take the re-naming of midwives as witches. Take the naming of nineteenth century unhappiness in women as hysteria. Take the naming in the 1950s of liberal-minded Hollywood actors as Communists (subjected to black-listing). Take the naming of children born to unmarried mothers as bastards. Take the naming of the internment of Jews in concentration camps in World War II as resettlement. Take the naming of civilians killed in the Vietnam War as collateral damage.
Trump Administration Word Usage Preferences
Requested by the Trump Administration of DHSS was that the following five words—besides science-based and evidence-based—not be used in their budget documents presented to Congress: 1) fetus, 2) diversity, 3) transgender, 4) vulnerable, and 5) entitlement (4).
Grant-funding by agencies of DHSS (e.g., the National Institutes of Health and CDC) is essential to academic medical and scientific researchers to support their work. Researchers’ grant proposals are submitted in response to Request for Proposals (RFPs) that describe the parameters linked to specific research funds. For example, an RFP can describe funding availability for research on the relationship of poor dietary intake to obesity, or research on chemotherapy and cancer outcomes.
It really behooves us not to forget that NIH and NSF funding led to the development of pharmaceutical agents to treat HIV/AIDS (that killed so many people in the US prior to 1990), the mapping of the human genome, more successful organ transplants, and treatments for formerly intractable progressive disorders. Federal funding is simply essential to US healthcare quality and medical advances.
Marginalized Populations – Censorship to Foster Greater Marginalization
The words (other than science-based and evidence-based) that the Trump Administration does not want utilized are those linked to US populations that have been customarily ignored in healthcare research studies. Yet, without findings on these populations, it can be difficult to demonstrate a connection to disparities in healthcare outcomes and life expectancy.
It is the diversity of public health research that has clearly revealed poverty as a risk factor for numerous chronic health disorders (and has led to community health education programs targeted at impoverished communities)!
Religious Fundamentalism at War with Science
Religious fundamentalists in the US have been attempting (since Darwin’s The Origin of Species was first published in 1859) to refute evidence-based research contradicting the Bible’s description of human origins. One particular method of attack has been to advocate the teaching of intelligent design in school biology classes as equally valid to the teaching of evolution—in a persistent effort to reduce the respect accorded to evidence-based scientific research.
Vice President Mike Pence does not believe in evolution, so it should come as no surprise that a religious perspective is predominating in the Trump Administration. Now, even the words evidence-based and science-based are no longer considered acceptable for use by the CDC. This really is no coincidence!
Social Determinants of Health as Vital to Public Health
Numerous studies have already shown strong evidence that medical research studies not specifically focused on women or ethnic minorities have tended toward embarking on clinical trials limited to white males. Therefore, the medical research findings were scientifically-limited to white males. To rectify this oversight (and increase understanding of medical treatment effects and outcomes in women and minorities), the NIH Revitalization Act was passed in 1993.
Since this federal law’s passage, far more medical and public health studies have focused on health issues related to women, African-Americans, Hispanics/Latinos, Native Americans, and LGBT people. In turn, this has improved clinicians’ knowledge of the healthcare issues affecting these populations.
The social determinants of health—which necessitate studying diverse populations’ healthcare system experiences and outcomes—have been recognized as crucial in understanding global public health outcomes. According to a 337-page manual published in 2007 by the British National Health Service (NHS), the following four elements are necessary to the public healthcare policy-making process (5):
- Problem recognition and definition;
- Formulation of solutions (including transferability of evidence into appropriate social strategies);
- Scalability into different contexts and settings;
- Political will.
Federal Effort to Mask the Problem
In an utter reversal of the public health-affirming concepts proposed in the aforementioned manual, the Trump Administration is attempting to mask problem recognition and solution formulation—as well as the other elements—to promote public health disparities based on gender, ethnic, and socioeconomic status. Moreover, the Trump’s political will is to renew the government’s focus on the needs of white males and the rich across the US—rather than the poor and disadvantaged (and even the middle-class)!
Trump Values – Fueling Censorship of Federal Agencies
It really comes down to President Trump’s core values. He cares about white male millionaires. The rest of us matter only in terms of our support (in the form of votes) for him. Otherwise, our health and well-being don’t matter. Erasing the capacity to study health disparities is just a step in the process of justifying elimination of social programs benefiting the poor, sick, marginalized, and vulnerable in our society.
Oh, that’s right! The CDC can no longer include the word vulnerable in its budget documents!
- Kaplan S, and McNeil Jr., D. (December 16, 2017). Uproar Over Purported Ban at C.D.C. of Words Like ‘Fetus’. New York Times Webpage: https://www.nytimes.com/2017/12/16/health/cdc-trump-banned-words.html?_r=0
- Bearak M. (June 7, 2016). Albinos are being killed in record numbers for their body parts Washington Post Webpage: https://www.washingtonpost.com/news/worldviews/wp/2016/06/07/albinos-are-being-killed-in-record-numbers-for-their-body-parts/?utm_term=.3ad545825792
- McKee C, and Bohannon K. (2016). Exploring the Reasons Behind Parental Refusal of Vaccines. Journal of Pediatric Pharmacology and Therapeutics 21(2): 104-109. Webpage: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4869767/
- Sun L, and Eilperin J. (December 16, 2017). Words banned at multiple HHS agencies include ‘diversity’ and ‘vulnerable’. Washington Post Webpage: https://www.washingtonpost.com/national/health-science/words-banned-at-multiple-hhs-agencies-include-diversity-and-vulnerable/2017/12/16/9fa09250-e29d-11e7-8679-a9728984779c_story.html?utm_term=.088f0f679786
- NHS National Institute for Health and Clinical Excellence. (2007). Constructing the evidence base on the social determinants of health: A guide. Webpage: http://www.who.int/social_determinants/knowledge_networks/add_documents/mekn_final_guide_112007.pdf