“Science knows no country, because knowledge belongs to humanity, and is the torch which illuminates the world,” stated Louis Pasteur, the French chemist and microbiologist known for his discoveries on, among other things, vaccination. Pasteur’s work led to breakthroughs in understanding the causes and prevention of disease, laying the foundation for much of modern medicine. In the last several months, scientific advances have resulted in vaccines for the deadly COVID-19 virus, which have begun to allow a slow return to normal. Invaluable inoculations like these new vaccinations have prevented millions of deaths: Smallpox and rinderpest have been eradicated; polio has been almost eradicated; and controlling measles has made this disease another target for eradication. If science is the “torch which illuminates the world,” however, a significant portion of the world’s population remains in the shadows.
June 14, 2021 HUMAN RIGHTS
The Historical Roots of Mistrust in Science
by Emily Bergeron
The impacts of COVID-19 and the response to the disease illustrate the failings of science, medicine, and science-based policy in the context of race, ethnicity, and income. Racial and ethnic minority groups are at a disproportionate risk of being uninsured, lacking access to care, and experiencing worse health outcomes from preventable and treatable conditions—including COVID-19. Further, factors known as social determinants of health take a disproportionate toll on these communities. Stressors, including systemic racism and sexism, have significant physical impacts, meaning members of these groups are more likely to suffer from certain medical conditions. For example, according to the Centers for Disease Control and Prevention, Black and Hispanic Americans have higher rates of chronic diseases, such as high blood pressure and type 2 diabetes, and lower rates of cancer screenings. As a result of unjust, racist policies, the same individuals are also more likely to live in neighborhoods with higher rates of violence, unsafe air or water, and greater exposure to workplace safety problems. The latter has been magnified during the pandemic, as many people of color work in essential jobs, which raise their exposure risks. Additionally, an initial distrust of the COVID-19 vaccine in Black and brown communities has been rationally based in a history marred by unethical scientific practices combined with other obstacles to vaccinations, such as requirements that connections to health centers or online registration processes disrupted access to lifesaving care.
That “knowledge belongs to humanity” makes the longstanding injustices in public policies concerning race, ethnicity, and income that have been based on bad science and unethical practices, as well as the lack of access to proper medical care, that much more egregious. Article 25 of the 1948 United Nations Universal Declaration of Human Rights states that “everyone has the right to a standard of living adequate for the health and well-being of himself and of his family.” Science makes this human right possible to the underserved; however, this may not appear to be the case. This inequity is steeped in a troubled past that demonstrates a lack of faith in science is warranted.
Science Used to Perpetuate Racism
As the eighteenth century drew to a close and Enlightenment rationalism replaced religion, science became a tool for justifying racist policies on scientific grounds. Laws in the United States and South Africa prohibiting intermarriage, for example, were based on “scientific” claims of biological dangers resulting from racial mixing; some mid-nineteenth century physicians and anthropologists contended children of mixed-race couples were more susceptible to disease. As the field emerged in the early twentieth century, geneticists warned that intermarriage might result in “genetic disharmonies.” Though research easily refuted these ideas, they were quickly replaced by assertions of social scientists that mixed-race children were morally and intellectually inferior. Of course, science has been used to refute these preposterous and damaging theories. However, these “science-based” claims have also been used to forward discriminatory policies and practices for centuries. The failure of “science” in making such claims was recognized after World War II by a panel of scientists for the United Nations Educational, Scientific and Cultural Organization (UNESCO). The group asserted that equality as an ethical principle of human rights could not be predicated on any scientific conclusion about racial characteristics.
Science’s sordid history of abuse does not end with its promotion of racist ideas. The Tuskegee Syphilis Study is commonly cited as a reason for mistrust due to the extent and duration of the deception and mistreatment of its subjects; however, the history of medical and research abuse of African Americans goes well beyond Tuskegee. From the grotesque surgeries of James Marion Sims to the stolen cell line of Henrietta Lacks, for over four centuries, biomedical research has been designed to exploit African Americans. (Darcell P. Scharff, et al. (2010). More than Tuskegee: Understanding Mistrust about Research Participation, J Health Care Poor Underserved, 21(3): 879–897.) Historical events are only reinforced by health system issues and discriminatory practices that persist today.
Medicine Continues to Disregard Issues Relating to Systemic Racism
The disproportionate impact of the coronavirus on Black and Latinx communities in the United States directed attention to the fact that while illnesses may not discriminate, varying access to treatment, preventive measures, and other resources result in imbalances in health care. Research has shown that minority patients receive less information, empathy, and attention from their physicians regarding their medical care than their white counterparts. (Katz RV, Green BL, Kressin NR, Claudio C, Wang MQ, Russell SL. The Willingness of Minorities to Participate in Biomedical Studies: Confirmatory Findings from a Follow-up Study Using the Tuskegee Legacy Project Questionnaire. J Natl Med Assoc. 2007 Sep;99(9):1052–1060.) Further, African American patients are less likely to receive medical services than white patients with similar complaints and symptoms. (Smedley BD, Stith AY, Nelson AR, editors. Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. 1 Washington, DC: National Academies Press; 2003.) Mistrust among African American patients is reinforced through such differential treatment. Even the lack of cultural diversity and competence among physicians can contribute to this mistrust of physicians. This significant attitudinal barrier, mistrust, has meant that despite federal mandates to ensure inclusion of women and minorities in all federally funded research, African Americans continue to participate less frequently than whites across various study types.
Science-Based Protections Do Not Reach All Communities Equitably
Many communities in the United States lack the science-based protections needed to provide clean air, clean water, nutritious food, and safe workplaces despite laws mandating such protections. Inadequate legal coverage from environmental stressors for those living in fenceline communities often creates problems, such as increased exposure to industrial air pollution and water contamination. Evidence of the adverse health outcomes for these communities is plentiful. (See, e.g., National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on Community-Based Solutions to Promote Health Equity in the United States; Baciu A, Negussie Y, Geller A, et al., editors. Communities in Action: Pathways to Health Equity. Washington (D.C.): National Academies Press (U.S.); 2017.) That this problem needs to be addressed has been recognized in the past with efforts such as Executive Order 12898: Federal Actions to Address Environmental Justice in Minority Populations and Low-Income Populations, 59 FR 7629; February 16, 1994, which directs federal agencies to “identify and address the disproportionately high and adverse human health or environmental effects of their actions on minority and low-income populations, to the greatest extent practicable and permitted by law; develop a strategy for implementing environmental justice; and promote nondiscrimination in federal programs that affect human health and the environment, as well as provide minority and low-income communities access to public information and public participation.” Real progress, however, fails to be made toward enacting sufficient science-based legislation to protect environmental justice communities.
The recent dismantling of science-based policies that guard against pollution accompanied by a failure to enforce environmental protections has exacerbated the conditions that disproportionately burden underserved communities. For example, the number of criminal cases against violators of environmental laws dropped significantly under the Trump administration. (Uhlmann, David M. “New Environmental Crimes Project Data Shows That Pollution Prosecutions Plummeted During the First Two Years of the Trump Administration.” Environmental Crimes Project (2020): 1-16.) Additional harm resulting from policies enacted under the prior administration further impacted these communities by restricting government scientists’ ability to monitor the injuries from air pollution and industrial groundwater contamination.
Disparities Are Perpetuated by Discrimination in the Field
Science continues to have a diversity problem. One Pew Research Center study found that Black people accounted for only 9 percent of the science, technology, engineering, and mathematics (STEM) workforce in 2019. A second Pew study surveying more than 2,300 U.S. adults working in STEM jobs found that gender and race are perceived as barriers to success. Half of the women surveyed from STEM fields indicated that they had faced gender discrimination compared to 41 percent of women outside STEM. This impacted earnings, promotions, and determinations of competency. Sixty-two percent of African Americans in STEM encountered discrimination compared to 50 percent of African Americans in non-STEM fields. It is even notable that since the first Nobel Prizes were awarded in 1901, only 16 have been awarded to Black recipients. No Black scientist has ever been awarded the Nobel Prize for chemistry, physics or physiology, or medicine. This lack of diversity in science is arguably at least in part responsible for the lack of information about particular demographics.
Public policy decisions in the past have been made that undermine public health safeguards and exacerbate longstanding inequities that place disenfranchised communities at increased risk of experiencing substantial harm. It is the responsibility of scientific and medical communities and lawmakers to address these past practices and work toward restoring faith in science. In the pages that follow, the issue authors will address the past and present problems that underserved communities face today.