The Tuskegee Syphilis Experiment (1932-1972) is the infamous American clinical study wherein African-American men went untreated for syphilis because researchers wanted to observe the illness’s untreated progression. Although penicillin had become a standard antibiotic for syphilis by 1947, doctors in this experiment intentionally failed to utilize it.
399 African American men were infected. By the end of the trial, 28 had died of syphilis, and 100 more from complications. 40 wives were infected, and 19 children had been born with congenital syphilis – children still alive to this day. Though these trials spearheaded changes in ethical standards and clinical study protocol (the Belmont Report’s three basic principles of research on humans: respect for persons, beneficence, and justice) race continues to be a driver of health inequities within healthcare institutions.
Currently, the Public Health Agency of Canada does not recognize racism as a social determinant of health (the external living conditions influencing a person’s health). Anecdotal evidence shows us that Black communities find anti-Black racism embedded in their everyday interactions with healthcare systems. Anecdotes, however, are not enough to support the structural changes needed to address this issue – what is needed now is data on how Black people access and receive care, and the barriers they face when doing so. While the Tuskegee experiments, and Canada’s equivalent, may seem like a thing of the past, when healthcare institutions in Canada refuse to identify race as a social determinant of health, their understanding of a person’s health is incomplete.
Arguably, the responsibility to collect data falls on the Public Health Agency of Canada (PHA), which, unlike the CDC and Toronto Public Health, does not consider race a social determinant of health. PHA has identified the following social determinants of health thus far: income, support networks, education, employment, social environments, physical environments, personal health practices, child development, biology and genetics, health services, gender, and culture.
Collectively, these factors seem to take into account the health effects of racism; benevolent inequities such as stereotyping – which reduces quality of life and hinders opportunities for advancement – falls under social environments and health services. Poor health due to limited health access because of weak financial stability falls under education and employment. But what has been excised from this conversation altogether is the factor which often links unsupportive social environments, limited access to health services, and at-risk economic status: race.
Multiple studies have found that people of colour, particularly African Americans, are burdened by lower social status, education, and income or employment conditions, with a 22% overall poverty rate compared to 9% for non-racialized persons. A 2013 study in Toronto, Canada states that “racial discrimination, as well as other forms of stress, negatively affects health by triggering responses in the cardiovascular, immune and endocrine systems.” Both within and outside of their bodies, people are struggling to communicate to healthcare providers the validity of their life experiences as racialized persons. Race is not synonymous with culture, not based in the social environment, and not defined by support networks. It is a factor people identify as influential to their health, an oppression which can no longer afford to be whitewashed by government healthcare institutions.
Well-sourced and analyzed data will ultimately prove Public Health Agency of Canada right or wrong in choosing not to add racism to their list of social determinants of health. If wrong, public policy changes from the top down will address this issue. PHA itself acknowledges the need for more research and evidence to provide better health care, stating in 2011, “Over the last five years, the need for better evidence has become manifest in the health sector.”
That was 2011; this is 2017. The debate over whether race-based health inequities are real or not is not just playing out across debate floors – it is playing out across racialized people’s bodies. It has been 80 years since the Tuskegee trials. Let that experiment be the last of its kind.
By Aishah Cader and Hagr Saad
Please note that opinions expressed are the author’s own. They do not necessarily reflect the views and values of The Blank Page.