Race Based Medicine, Colorblind Disease: How Racism in Medicine Harms Us All

Abstract

The genome between socially constructed racial groups is 99.5%–99.9% identical; the 0.1%–0.5% variation between any two unrelated individuals is greatest between individuals in the same racial group; and there are no identifiable racial genomic clusters. Nevertheless, race continues to be used as a biological reality in health disparities research, medical guidelines, and standards of care reinforcing the notion that racial and ethnic minorities are inferior, while ignoring the health problems of Whites. This article discusses how the continued misuse of race in medicine and the identification of Whites as the control group, which reinforces this racial hierarchy, are examples of racism in medicine that harm all us. To address this problem, race should only be used as a factor in medicine when explicitly connected to racism or to fulfill diversity and inclusion efforts.

Keywords:

• race and culture/ethnicity
• racism
• health disparities
• medical guidelines
• standards of care
• and racial hierarchy

This article is referred to by:

Beyond the Medical Model: Retooling Bioethics for the Work Ahead

Against the Reification of Race in Bioethics: Anti-Racism without Racial Realism

Race-Conscious Bioethics: The Call to Reject Contemporary Scientific Racism

Addressing Meso-Level Mechanisms of Racism in Medicine

How to Eliminate Racism in Health Care: Building Diversity Competency in a Regional Health Authority in Canada

To What Extent Are Calls for Greater Minority Representation in COVID Vaccine Research Ethically Justified?

Racial Injustice and Meaning Well: A Challenge for Bioethics

True Colors: Whiteness in Bioethics

Putting Anti-Racism into Practice as a Healthcare Ethics Consultant

Addressing Racism in Medicine Requires Tackling the Broader Problem of Epistemic Injustice

Beyond Seeing Race: Centering Racism and Acknowledging Agency Within Bioethics

INTRODUCTION

The genomic age showed that the genome between humans was 99.5%–99.9% identical; the 0.1%–0.5% variation between any two unrelated individuals was greatest between individuals in the same local population; and there were no identifiable continental or racial genomic clusters (American College of Cardiology, 2019; Cavalli-Sforza, Menozzi, and Piazza 1994; Kahn, 2013; Lao et al. 2008; Levy et al. 2007, Jorde 2003; Lewontin 2005; Maglo, Mersha, and Martin 2016; National Kidney Foundation 2014; Perez-Rodriguez and de la Fuente 2017; Plaza et al. 2003; Roberts 2012; Yu et al. 2002). Notwithstanding this evidence, biological race and sometimes ethnicity continue to be noted as factors in health disparities research, medical guidelines, and standards of care (Adler and Rehkopf 2008; American College of Cardiology, 2019; National Kidney Foundation 2014; Nelson and Hackman 2013; Shriner and Rotimi 2018; Swetlitz 2016; Wakefield et al. 2018). Most recently, the Journal of Internal Medicine published an article that connected obesity disparities in Blacks with the “unique contributions of physiologic factors related to race,” which was rightly challenged because the researchers claimed that unspecified genomic racial differences linked to skin color caused these unique contributions to Blacks’ physiologic differences (Gower and Fowler 2020; Tsai et al. 2020). Thus, even though there are no identifiable racial genomic clusters, race continues to be misused as a biological reality in health disparities research, medical guidelines, and standards of care to reinforce the erroneous notion that racial and ethnic minorities are inferior to Whites. This article discusses how the continued misuse of race in medicine and the identification of Whites as the control group, which reinforces this racial hierarchy, are examples of racism in medicine that harm all us.

RACE AS BIOLOGY, A TOOL FOR HIERARCHY

Although there are many recognized socially constructed races (African, Asian, Latino, Native American, Pacific Islander, and White), there is no agreed upon definition of what constitutes biological race or how it differs from ethnicity (a group’s cultural identity). Scholars have tried to define biological race using the “one drop” rule, percentage of ancestry, skin color, or self-identification (Chowkwanyun 2013; Fletcher 1997; Khan 2009; Roberts 2012; Washington 2006). The “one drop” rule originated from the 1662 Virginia law that found if a person had one drop of Black they were not considered White (Bradt 2010). As a result of genetic testing, many people now know their percentage of ancestry and use it as a way to define race based on the greatest percentage of ancestry. Skin color is based on the amount of melanin in one’s skin to determine racial differences, while self-identification leaves it up to the individual to choose a particular race. Each of these measures presents a myriad of problems for explaining how race is a biological factor in health disparities research, medical guidelines, and standards of care.

For example, health disparities are defined as differences “in the quality of health and health care that mirror differences in socioeconomic status, racial and ethnic background, and education level,” which stem from many factors including increased risk of underlying genetic, ethnic, or familial factors (National Institute of Allergy and Infectious Disease 2018). Yet, neither racial background nor underlying genetic factors is defined. If we use skin color to define racial background or underlying genetic factors in health disparity research, how do we treat the differences in skin color between Mariah Carey, Beyonce, and Lauryn Hill? Do we measure the amount of melanin each one has to determine their race and use this as a genetic factor? If we leave it up to self-identification how do we treat Whites (Jessica Krug and Rachel Dolezal) who were born to White parents, but self-identify as Black people? In medical guidelines regarding cholesterol levels race is used to create different levels for Blacks and Whites, but there is no clear standard for Asians (American College of Cardiology, 2019; Mcintosh et al. 2013; Srinivasan et al. 1987). Instead cholesterol levels for Asians are broken up by ethnicity, with South Asians (Bangladesh, India, Nepal, Pakistan, and Sri Lanka) being more at risk for high cholesterol levels and poor outcomes compared to East Asians (Japan, Korea, and China), without explaining how cultural differences between South and East Asians impacts cholesterol levels. If we use percentage of ancestry to define race or ethnicity for cholesterol levels, how do we treat Tiger Woods, who is 25% Thai, 25% Chinese, 25% White, 12.5% Black, and 12.5% American Indian (Garber 2002)? Would a physician use the South Asian, East Asian, White or Black cholesterol level? Standards of care also include biological race as illustrated by different Black and White estimated glomerular filtration rates (eGFR) for kidneys (National Kidney Foundation 2014; Trnka 2019). If we use the “one drop” rule to define race for eGFR, how far back should we go to determine race? In 1985, a Louisiana court ruled that a woman who had a Black relative six generations ago could not identify as White due to the “one drop” rule (Bradt 2010). So do we have to go back seven, eight, or ten generations to determine White race for the eGFR rate? Also, what eGFR rate should be used for President Obama, who is biracial?

Because biological race has not been supported by genetic findings or linked to the genes that affect health, numerous scholars have argued against the continued use of biological race, to no avail (Basset and Krieger 1986; Benjamin 2019; Duster 2005; Perez-Rodriguez and de la Fuente 2017; Roberts 2012). However, as numerous medical school, nursing, and medical associations have declared racism a public health crisis, the time has come to acknowledge the fact that the continued use of race as a biological reality is an example of racism in medicine, which must stop (Association of American Medical Colleges 2020; Student National Medical Association, Inc. 2020; Thew 2020; Vestal 2020). Racism is a social system where the racial group in power creates a racial hierarchy in which other racial groups are deemed inferior (Benjamin 2019; Berger and Miller 2020; Roberts 2012; Williams, Lawrence, and Davis 2019). In the United States, this hierarchy is reinforced by laws, institutional practices, and socially constructed terms and norms (Bonilla-Silva 1997; Feagin 2006; Roberts 2012; Yearby 2012). For example, race is a socially constructed term used to differentiate genetically and biologically similar groups into separate groups as a way to foster racial hierarchy (Bonilla-Silva 1999).

Historically, medicine has used biological race as a tool to reinforce racial hierarchy and support the notion that there are Black genes, which cause Blacks to be inferior to Whites (Chowkwanyun 2013; Washington 2006). This is illustrated by the Bell Curve Intelligence Theory, the Eugenics Movement, and the continued use of biological race in health disparities research, medical guidelines, and standards of care to denote some unspecified and undefined biological difference. Some argue that social race (i.e. race as a socially constructed term) alone can serve as a proxy for racism in health disparities research, medical guidelines, and standards of care. However, this ignores the fact that social race, like biological race, is an illusion created to establish racial hierarchy. Thus, decoupling social race from racism reinforces the notion that nonwhite racial groups are inferior or different without providing a reason for these differences, which is racism. The continued misuse of race (biological and social) in medicine harms us all by reinforcing racial hierarchy that results in racism health disparities, corrupts knowledge production, and limits access to equal treatment (Clark 2005, Bowser 2001; Green et al. 2007; Institute of Medicine 2003; Penner et al. 2010; Schulman et al. 1999; Yearby 2012).

RACISM HEALTH DISPARITIES

No socially constructed race has superior health outcomes compared to any other group in all measures; however, race remains a factor in health disparities research. This harms us all because it perpetuates the falsehood that Whites are superior, prevents medicine from addressing health disparities experienced by all racial groups, and obscures the true cause of poor health outcomes: racism (Lewis 2004; Malat, Mayorga-Gallo, and Williams 2018; Melamed 2015; Roberts 2012; Yearby 2020). For example, research that highlights the disparities between Black and White infant mortality rates ignores the rates for Asian and Latino women as well as African and Black Caribbean women living in the United States, which are better or the same as Whites (David and Collins 2007; Center for Disease Control and Prevention 2019). In 2016, Asians had the lowest infant mortality rate at 3.6 per 1,000 live births, followed by Whites with a rate of 4.9, Latinos with a rate of 5, and Blacks with a rate of 11.4 (Center for Disease Control and Prevention 2019). When compared to other industrial countries, the rate for Asians would be 31st in the world and better than the United Kingdom, while the rate for Whites and Latinos would be 43rd behind Canada, Cuba, the Korean Republic, and Singapore (The World Bank 2018a). Even though Whites do not have the best rate, they are still used as the standard for infant mortality when discussing disparities in the United Sates. This ignores the fact that the infant mortality rates for White women are not superior to Asian and Latino women as well as African and Black Caribbean women living in the United States, reinforcing the notion that all other racial groups are inferior when compared to Whites.

Furthermore, numerous studies indicate that Whites had greater health decline than Blacks and Latinos during the 2012 economic downturn, equal or poorer mental health than Blacks, worse physical health than Asians on many measures, and poorer health outcomes when compared to groups in other countries (Malat, Mayorga-Gallo, and Williams 2018). Morbidity and life expectancy data also show that no racial group is superior. National data on psychiatric disorders show that Whites have higher lifetime rates than Blacks, Asians, and most Latinos (Miranda et al. 2008). In fact, for over 100 years, Whites have had the highest suicide rate of all racial groups (Malat, Mayorga-Gallo, and Williams 2018). Additionally, the most recent life expectancy data from the United States demonstrates that Latinos have the longest life expectancy throughout their life course (birth, 65 years old, 75 years old), where data for Asians, Pacific Islanders, and American Indians was not reported (Center for Disease Control and Prevention 2017). At birth, Latinos life expectancy was 81.9 years old, Whites was 78.8 years old, and Blacks was 75.1 years old. When compared to other industrial countries, the rate for Latinos would be 19th in the world and better than the United Kingdom, Canada, and Germany, while the rate for Whites would be 45th behind the US territories of Guam, Puerto Rico, and the U.S. Virgin Islands (The World Bank 2018b). Notwithstanding these findings, Whites are used as the model for health in the U.S., even when other racial groups have better health, reinforcing the notion that Whites are superior and preventing the treatment of Whites to improve their poorer health outcomes. It also precludes medicine from acknowledging the root cause of poor health outcomes for all groups, which is racism.

Three decades of research has shown that racism is associated with health disparities for all socially constructed racial groups (Green et al. 2007; Schulman et al. 1999; van Ryn et al. 2006; Williams, Lawrence, and Davis 2019; Williams, Neighbors, and Jackson, 2003). For example, research shows that racism increases the risk of mortality for Whites and Blacks (Lee et al. 2015). Experiencing racism has also been associated with dangerous health behaviors for all races. In a study conducted by Shariff-Marco et al., being a current smoker increased by 24 percent for those who reported experiencing general racism sometimes and by 95 percent for those who reported experiencing general racism often or all the time compared with those who did not (Shariff-Marco, Klassen, and Bowie 2010). The odds of binge drinking increased by 31 percent for those who reported experiencing general racism often or all the time, while the odds of being overweight or obese increased by 18 percent for those who reported experiencing general racism sometimes and by 33 percent for those who reported general racism often or all the time (Shariff-Marco, Klassen, and Bowie 2010). The increase in risky behaviors as a result of experiencing general racism affected all racial groups, including Blacks, Whites, Latinos, Asians, Pacific Islanders, American Indians, and Alaska Natives (Shariff-Marco, Klassen, and Bowie 2010). Yet, there were disparities between groups. Whites were more likely to be current smokers, binge drink, and be overweight and obese compared to Asians and Pacific Islanders. Additionally, Blacks were less likely to binge drink than Whites, and Latinos were less likely than Whites to be a current smoker.

Medicine reifies the racist belief that Whites are superior to all other socially constructed racial groups when social race is used to explain health disparities without linking it to a discussion about racism. This prevents medicine from addressing health disparities experienced by all racial groups and obscures the truth that no racial group is superior because racism harms us all (Benjamin 2019; Berger and Miller 2020; Kahn, 2013; Roberts 2012; Yearby 2011). The harm caused by racism in medicine is further illustrated by the collection of information that is scientifically invalid and irrelevant, which leads to misdiagnosis and unequal treatment (Ford and Airhihenbuwa 2010; Roberts 2012; Yearby 2012).

THE CORRUPTION OF KNOWLEDGE PRODUCTION

Using race as a biological reality in medicine reinforces the misguided notion that other racial groups are genetically inferior to Whites, which is best illustrated by sickle cell. Sickle cell disease is labeled as a Black disease in medical guidelines, standards of care, and research (Adler and Rehkopf 2008; National Institutes of Health, 2002; Okwerekwu 2017; Solovieff et al. 2011; Tanabe et al. 2019). However, people from all different races (Asians, Whites, and Latinos) and places (Afghanistan, Bangladesh, Burma, Greece, Honduras, India, Indonesia, Italy, Spain, and Turkey) suffer from sickle cell (Bloom 1995; Wilkinson 1974). Nevertheless, medical schools, articles, and guidelines still racialize the disease by primarily attributing it to Blacks (Adler and Rehkopf 2008; Nelson and Hackman, 2013; Shriner and Rotimi 2018; Swetlitz 2016; Wakefield et al. 2018). This classification is based on the decision in 1910 by physicians that sickle cell, like syphilis, was a Black disease (Herrick 2001; Kwateng 2014).

Although the first three recognized cases of sickle cell in the United States were in individuals of mixed race, the physicians designated it as a Black disease because at that time Blacks were viewed as disease carriers, which corrupted the purity of whiteness (Kwateng 2014; Wailoo 2001). After this initial misclassification, the medical community continued to link the disease to being Black, which was used by white supremacists as support for racial segregation laws and practices (Kwateng 2014; Nelson 2011). By the 1950s, researchers began to argue that the disease was linked to environmental factors, not biological race, yet the Journal of the American Medical Association disputed this claim writing that “sickle cell anemia, however, is independent of either geography or customs and habits. Its occurrence depends entirely on the presence of Negro blood, even though in extremely small amounts” (Allison 1954; JAMA 1947; Kwateng 2014). Due to this misuse of race as a biological reality, sickle cell has been deemed a Black disease. This harms non-Black individuals because even if they show symptoms of sickle cell, they are rarely tested or provided with appropriate care since it would call into question their racial purity (Swetlitz 2016).

Additionally, even though more people suffer from sickle cell (“Black disease”) than cystic fibrosis (“White disease”), funding for cystic fibrosis research is 3.5 times more than funding for sickle cell research (Okwerekwu 2017). Furthermore, although most physicians have been taught that sickle cell is a Black disease, they have not been taught how to treat the disease as illustrated by a 2015 survey of family physicians (Begley 2017; Mainous et al. 2015). The study showed that only 20 percent of more than 3,000 family physicians felt qualified and comfortable in treating sickle cell disease, leaving many sickle cell patients without proper routine care (Begley 2017; Mainous et al. 2015). Consequently, many sickle cell patients seek care in the emergency room (ER) for acute episodes, “called vasco-occlusive crisis, in which an inadequate blood supply triggers excruciating pain and damages vital organs” (Begley 2017). Because these patients are Black and seeking pain medication in the ER, they are often tagged as drug addicts and denied treatment, resulting in many unnecessary deaths (Begley 2017; Lanzkron, Carrol, and Haywood 2013). In fact, research showed that in the emergency room “sickle cell patients waited 60 percent longer to get pain medication than other patients who reported less severe pain and were triaged into a less serious category” (Bengely, 2017; Haywood et al. 2011, 2013). Hence, the misuse of race as a biological reality in sickle cell disease has harmed all groups, because it causes collection of information that is scientifically invalid and irrelevant, which limits testing of non-Blacks for the disease as well as Blacks’ access to the proper treatment. Racism in medicine also results in unequal treatment for all racial groups.

UNEQUAL TREATMENT

The identification of Whites as the control group and the misuse of race as a biological reality results in unequal treatment. Some diseases use Whites as the standard for describing disease, preventing equal treatment for other racial groups. For example, most medical guidelines and standards of care showing the different stages of pressure sores feature white skin and fail to discuss how to identify pressure sores that develop in dark-skinned individuals (Boyko, Longaker, and Yang 2018). In addition, the symptom guidelines for COVID-19 note that it can result in “pink and white” COVID toes, without any mention of how to identify these symptoms in those with dark skin (Evans et al. 2020). The failure to provide training or a medical description that is relevant to all patients, prevents dark skinned people of all races from receiving appropriate treatment (Benfer et al. 2020). The misuse of race in medicine also obscures the real cause of health disparities, racism, which prevents equal access to treatment. This is best demonstrated by breast cancer.

In the 1930s, medical research used biological race to explain disparities between Black and White women’s breast cancer rates (Cohn 1938). By 1992, research showed that after controlling for socioeconomic status (SES) the disparities between Black and White women were all but eliminated (Gordon et al. 1992). In fact, breast cancer mortality rates for Black and White women in Chicago were the same between 1980 and 2005 (Roberts 2012). By 2006, Black women were more than two times likely to die from breast cancer than White women in Chicago, ten times the disparity seen in New York. Although no major event happened to Black women in Chicago that would change their biological makeup, some researchers began to posit that there was a biological basis for these disparities, rather than the true cause, which was unequal treatment (Albain et al. 2009; Menashe et al. 2009; Roberts 2012). Research showed that Black women did not have the same access to mammograms in Chicago, and thus were diagnosed at later stages, resulting in disparities in breast cancer mortality rates between Black and White women (Roberts 2012). Nevertheless, some researchers argued that because Black and White women in Chicago were treated by the same doctors, but still had disparate mortality rates, there must be some unspecified biological difference (Albain et al. 2009). However, this ignores the fact that treatment by the same doctor can vary as a result of institutional practices based on insurance status. In fact, at the time, many Chicago hospitals instituted practices that limited access to mammograms for women on Medicaid because Medicaid did not pay the full cost of the test and many private insurers charged co-payments for mammograms (Roberts 2012). Black women were disproportionately poor and on Medicaid during this time. Consequently, Black and White women with the same doctor would receive different treatment based on Medicaid status and ability to pay a co-pay, which explains differences in breast cancer mortality rates better than an unidentified biological difference.

Unfortunately, the belief that Black women are biologically different than White women persists as illustrated by triple negative breast cancer (TNBC) research. A majority of the TNBC research conducted by individuals of all different races continues to suggest that the disparities are due to biological differences between Black and White women without identifying how race is being defined or any biological factor linked to TNBC (Perez-Rodriguez and de la Fuente 2017). Furthermore, these studies ignore the significance of other factors shown to increase the odds of having TNBC, such as SES, Medicaid insurance, living in the Midwest and the South, and having multiple comorbidities (Carey et al. 2006; Perez-Rodriguez and de la Fuente 2017; Sineshaw et al. 2014). None of these factors are tied to biological race, but they are tied to racism. SES is tied to racism because Blacks have historically been denied equal access to employment and wealth due to racism, and thus, a majority of Blacks have lower SES than Whites (Yearby 2018). The failure to address access to treatment based on SES is also an example of racism as Whites have limited all racially groups’ access to resources, such as health care treatment, in order to prevent “undeserving” racial and ethnic minorities’ access (Malat, Mayorga-Gallo, and Williams 2018; Braveman, Egerter, and Williams 2011). This not only prevents racial and ethnic minorities from accessing treatment, but also Whites who constitute the majority of poor individuals in the U.S. (Braveman, Egerter, and Williams 2011). Consequently, instead of spending money to erase barriers to treatment tied to SES that could save lives, money is being used to see whether there are biological differences even after three decades of research has shown that there is no connection between skin color and breast cancer rates. This not only reifies the racist belief that Whites are superior, but also prevents women of all races from equal to treatment.

CONCLUSION

The continued use of race (biological and social) in medicine and the identification of Whites as the control group are examples of racism. Biological race is not supported by genetic finings, clearly defined, or linked to the genes that affect health, yet it continues to be used as a factor in health disparities research, medical guidelines, and standards of care to denote superiority. Additionally, using social race without explicitly mentioning its connection with racism allows individuals to ignore racial hierarchy and all the ways it impacts health outcomes. Dismantling the system of racism in medicine that reinforces racial hierarchy will not be easy or happen overnight. However, we can no longer allow racism in medicine because it corrupts knowledge production and limits access to equal treatment that harms us all. Instead of using race (biological and social) as a measure for health disparities research, medical guidelines, and standards of care, I suggest using the social determinants of health and other factors, including but not limited to: neighborhood (based on zip code); education; occupation; job; health insurance coverage; income; wealth; health behaviors; experiencing racism; gender identification; disability status; and age.

To be clear, I am not suggesting the adoption of a colorblind approach in medicine because this ignores the impact of racism on health care outcomes and reinforces these inequalities as evidenced by the “colorblind” approach to the allocation of medical resources (Yearby 2011). Nor do I support putting an end to the collection of self-identified racial information because this would prevent us from tracking how racism has impacted all groups, including limiting equal access to resources and opportunity. I propose tracking social race when it is explicitly connected to racism. This will allow us to identify and address harms tied to racism, such as the lack of equal access to health care and failures to have a diverse group of health care professionals. For example, health disparities research that includes social race should include a statement like “the lack of access to health care due to racism caused differences in health outcomes for all racial groups.” We also need to continue to track the social race of health care professionals to identify and address the ways that racism prevents racial and ethnic minorities from becoming health care professionals. In addition, an individual’s culture and identity, which can be relevant in creating a personalized treatment plan and culturally sensitive and appropriate health messages for the patient, should be tracked. Finally, the population group, defined by these factors, with the best health outcomes should be used as the model for other groups, instead of deferring to one group consistently.