Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-First Century

Chapter 4 examines the relation between race and disease. It begins with the “excess deaths” of African Americans; one out of every three Black deaths in the United States is the result of inequality and reflects the “Black-white mortality gap” (81). Similarly, while immigrants to the United States from Latin America are generally healthier than white Americans, despite a general lack of access to medical care and poverty, this higher level of health disappears within a generation.

Yet science continues to point to diagnoses for these disparities in health at the molecular, rather than societal, level. The notion of “racial diseases” is tied to the invention of biology in the construction of the category of race. Racial diseases are diseases that supposedly affect certain racialized populations at greater rates than other populations, due to biological differences. The theory of racial diseases also includes supposedly different experiences of diseases. For example, science had marked Africans as inherently laboring beings, “naturally” suited to exploitation, so they were considered to be resistant to both disease and even pain. Disease itself was thus racially constructed by science.

More specifically, Thomas Jefferson insisted that there were inherent physical and intellectual “weaknesses” in Black individuals, and the Union army argued that Black soldiers had smaller lungs and were predisposed to tuberculosis. There was a scientific insistence on tuberculosis as an inherited disease. The discovery in 1869 that tuberculosis was caused by tubercle bacillus was rejected by many physicians, who continued to insist that it was genetic and that Black people were more likely to inherit the disease.

The well-known Tuskegee Study of Untreated Syphilis in the Negro Male was conducted on poor Black men with syphilis. The study is best known for its unethical exploitation of these men, who were told they were being treated but were actually denied treatment so that their bodies could decline and then, ultimately, be autopsied after death. The real reason for the study was to confirm that Black men experienced syphilis differently than white men, mainly through the cardiovascular system rather than the neurological system; scientists hoped to back their claim that African American men’s brains were not as “developed” as white men’s brains.

Physicians publishing in some of the top medical journals in the 19th century insisted that syphilis was the result of emancipation, attributing the disease to Black men no longer being as “hygienic” as they had been while enslaved. The chair of the medical school at the University of Pennsylvania argued in the 1850s that Black individuals medically required the exploitative labor of enslavement so that their blood would circulate properly; thus, slavery was “liberating” for them. During the Civil Rights era, the diagnosis of schizophrenia was often assigned to Black activists, whose resistance to racism was pathologized by scientists.

Moving from this past history of racialized disease to the present moment, one of the very first descriptors gathered when diagnosing a patient is their race, along with age and sex. This information determines all that follows and is the preamble to medical rounds and the prerequisite to diagnosis. As a result, many medical doctors treat patients differently and according to their race, with drugs distributed at different dosages because metabolism is believed to be racially distinct. Anesthesia has historically been delivered at different rates as well, tracing back to scientific claims that West Africans were “built” for the pain of slavery.

The racial profiling that is endemic to today’s medicine leads to under medicating, even in instances of breakages of long bones, which are extremely painful. Studies have shown that when Black patients ask for pain medication at the same rate as whites, they receive pain medication at half the rate. Institutions assure medical students that they are receiving a progressive education, teaching medical students to be aware of their implicit bias. Yet institutions continue to use race as part of their diagnostic toolkit: Doctors may become aware of their own personal bias but never recognize the foundational role that the biological construction of race continues to play in diagnosis and treatment.

Beginning in the mid-1980s medical research once again insisted on racial differences as an important distinguisher of bodies and an important factor long ignored in research. There was a sea change in thinking that insisted that medical research should pay attention to bodily differences such as sex and also race so that those who had previously been marginalized or abused by science could now be included and cared for by science.

Starting in 1986, federal laws “institutionalized the scientific use of racial categories” (104) so that a supposedly broader range of human subjects would be included in clinical trials. Analysis by race is required for any federally supported university trial. The National Institutes of Health passed the Revitalization Act in 1993, which mandated a diversity of subjects in clinical trials. These requirements also aim to ensure inclusion of those who have been neglected by medicine, yet “race consciousness” in federal funding is a “paradox.” It is essential that healthcare includes everyone. Yet the inclusion of those previously neglected because of their racial designation potentially only reinforces biological definitions of race that, in turn, elide the very societal injustices that are ostensibly being addressed.

The reason for including those who have been excluded should not be to find innate biological differences within these racial groupings. Rather, the aim should be to give equal access to the benefits of clinical trials and to provide a more diverse group of subjects to reflect humanity. Nonetheless, researchers continue to approach race as a biological rather than social category, with the result being a search for genetic rather than social reasons for health disparities.

For example, Black women in the United States have higher rates of extreme preterm birth. One influential study sought to look at “the Black race” independent of socioeconomic issues and other stressors and concluded that there was most likely a genetic component to these very early deliveries. “The slavery hypothesis” for the high rates of high blood pressure among African Americans is another long-standing theory of biological race. It argued that African Americans are disproportionately affected by high blood pressure because those Africans who were able to endure dehydration, due to the retention of sodium that occurs with high blood pressure, were more likely to survive the Middle Passage. This theory has since been disproved.

Most studies have paid attention to race by placing subjects into social and political categories of race, which are then the basis for making claims about racial genetics. Even worse, these studies then claim that “genetic difference explains racial disparities in health” (116, emphasis added). Along these same lines, genes are generally referred to by scientists, and in scientific literature itself, as the reason or cause of a disease, with environmental factors rendered of secondary importance in their designation as “triggers.”

This approach distracts from harmful environmental factors that can and should change, thus distracting from the preventable cause of disease. Attention to environmental factors, in contrast to gene-targeted therapies, is crucial for everyone’s health. The work of scientists who are attending to these environmental factors is the subject of Chapter 6.

Chapter 6 begins with the statistic that in Chicago in 1980, Black and white women’s mortality rates from breast cancer were the same, but by 2005, Black women were twice as likely as white women to die of breast cancer. This shift is not a reflection of genetic changes but environmental ones.

Roberts traces how medical care for Black women does not reflect the improvements in care that have developed for breast cancer, so white women’s survival rates have improved two-fold while Black women’s survival rates have not improved at all. Mammograms are often not available at hospitals located in predominantly Black neighborhoods. Mammography also varies drastically in quality: the technology is usually much better at university-affiliated hospitals, which often also have better trained interpreters of mammograms. Similarly, the best treatments are generally outside of Black neighborhoods, meaning that the best diagnostics and treatments are generally the farthest away from the women who are sickest. In addition, many people of color do not trust medical professionals or the healthcare system at all due to its long history of systemic abuses.

Yet equal access to the same quality healthcare would not be enough to end inequities, as health is determined largely by social environment. Scientists have tended to fall into two different camps: race is either a social category that has nothing to do with disease, or it is a biological category that determines differences in disease. In contrast, Roberts argues that race is a social category that has biological consequences. The fundamental question in this chapter, then, is how racism becomes embodied. Roberts moves into an analysis of how the study of race could adopt an embodiment approach. This approach, instead of focusing on race as “innate biology,” examines how the world, including racial inequities, becomes embodied and thus part of biology.

An embodied framework for thinking about public health was initially resisted in the 1980s and 1990s because it did not stress individual behaviors and responsibility. Now, however, the greatest obstacle to this approach is genetic models that insist on innate biology as intrinsic to race. Embodiment researchers focus on three ways that racial inequity becomes embodied: Through consistent and chronic stress, segregation in neighborhoods that have experienced proportionally greater toxic exposure, and inherited harms through epigenetic mechanisms. 

Chronic stress results in inflammation in the body and raises the risk of a range of diseases, which often express themselves more dramatically. Health is also damaged by environmental racism. Black neighborhoods have historically been exposed to toxins at much higher levels than other neighborhoods; in turn, these neighborhoods make people sick, with the rate of death much higher for everyone living in predominantly Black neighborhoods, including white people. These neighborhoods also suffer from the absence of public services. Finally, inequality, stress, and trauma can be inherited epigenetically. Epigenetics refers to changes in the genome that do not involve changes in the structure of genes themselves but, instead, the expression of genes and level of intensity of expression. These epigenetic “markings” can be inherited but are also reversible.

The negative health impacts of environmental racism can thus be passed down epigenetically. This process is not the same as race being biological; epigenetic changes are environmentally, rather than biologically, based, and they can be interrupted. Thus, again, Roberts urges a focus on environmental factors.

The insistence on a genetic source for disease stems partly from how pharmaceutical products are designed, namely to address biologically based determinants of disease. Race is thus commodified in the production of pharmaceutical products. These products, which are marketed through the familiar biologism of race, do not actually address genetics and elide epigenetics.