Vaccine messaging must address grim history of race-based experiments
Vaccine hesitancy and public trust dominate discussions on the allocation and prioritization of COVID-19 vaccines now that vaccines have begun to arrive. But, as government officials, bioethicists and other healthcare professionals strategize how to fairly distribute vaccines on a national level, we must ask ourselves if we have missed a step – how might this vaccine rollout and subsequent restrictions be perceived by BIPOC communities?
We all experience the healthcare system differently. Those who identify as Black, Indigenous or People of Colour (BIPOC) often experience discrimination while accessing healthcare and sometimes have little trust in healthcare services or government-funded initiatives. Given Canada’s history of medical abuse in these communities, health recommendations are routinely scrutinized with anxiety.
On Dec. 3, Ontario’s chief medical officer of health, David Williams, noted that the COVID-19 vaccine may be required for “freedom to move around.” He added that people will not be forced to take the vaccines but those who choose not to be immunized against SARS-CoV2 may be subject to restrictions.
But have we thought about what this would mean for groups that already experience restrictions as part of their lived realities? What does it mean for people from BIPOC communities whose anxieties about the vaccine are rooted in the history of racial violence and deep-seated experiences of abuse? For people who already experience barriers accessing healthcare? For access to the already limited beds in long-term care facilities or the few culture-specific facilities? For the many personal support workers (PSWs) from the BIPOC community and their availability and job security should they decide not to get vaccinated?
Examples of the racist treatment and medical experimentation that Black and Indigenous people across North America have been subjected to are numerous. Most have read about the atrocities perpetrated against the 400 Black men in Tuskegee, Ala., who were unknowingly enrolled in a 40-year study on the effects of syphilis when left untreated. Advances in gynecology are linked to vile forms of experimentation on Black women – the version of the speculum most commonly used in OB/GYN is credited to James Marion Sims, who improved this device at the painful expense of Black women on whom he performed countless procedures without the use of anesthesia. Or Henrietta Lacks, a Black woman whose cancer cells were taken for further study without her consent and which were used to create the first immortalized human cell line. Many scientific advances (e.g., polio vaccine) are due to experimentation with her cell line, widely known as the HeLa cells. More recently and throughout history, forced sterilization policies have targeted BIPOC women and women with disabilities in the U.S. and across Canada.
In Canada, we need to look no further than the decades-long medical experimentation and abuse inflicted on Indigenous youth in residential schools and sanatoriums without their consent. From the 1930s to the 1970s, Canada subjected Indigenous people to cruel medical procedures and experiments including but not limited to skin graft testing, vaccine experimentation, nutrition experiments and dental observations, among other violent acts. Breakthroughs from the copious medical testing and research done on Aboriginal children were later used to treat the wider Canadian population, yet these same medicines were withheld from the Aboriginal children. Not to mention the history of coerced sterilization of Indigenous women as recent as 2018.
These larger sociocultural impacts are not widely taken up in discourse on COVID-19 vaccine hesitancy. Government focused research excludes this as well. For example, a recent Statistics Canada COVD-19 study explored group differences and reasons for vaccine hesitancy. Several sociodemographic factors were explored including age, education, employment status, marital status, immigrant status and region of residence. Yet race, a factor likely to impact how vaccines are viewed, was not explored. This is astounding, especially when compared to the U.S. National Institute of Health (NIH), whose Institute on Minority Health and Health Disparities issued a funding opportunity to address vaccine hesitancy, uptake and implementation among populations that experience health disparities. This type of awareness and acknowledgment is necessary in the Canadian context as well – where are the funding opportunities and research efforts dedicated to exploring these issues here?
The vaccine distribution tables that are forming and the bioethics tables that have contributed to the discussions at the wider government level need to engage with these deep histories before making recommendations that will affect the lives of members of these groups. Any recommendation provided must consider what restrictions currently look like for groups that have been underserved, underrepresented and historically silenced. What is needed is cultural compassion, understanding and culturally sensitive materials – education and engagement that include workarounds for BIPOC groups.
In a recent piece that cautions against viewing the vaccine as a magic bullet, Maya J. Goldenberg noted that “a vaccine program is only good if people want to get vaccinated.” When considering the hesitancy among racialized groups, we could break this down further to say that a vaccine program is only good if people trust the science, the healthcare system and what it stands for.
We cannot put a band-aid on what is a deep, open wound for some. What is necessary is debridement (through meaningful, respectful and thorough engagement with communities), sutures and healing – we need to engage with the communities, truly address the histories of harm and work toward building trust from the ground up.
If people lack trust in a system that once exploited and abused them and do not feel safe engaging in any form of healthcare, they will not want to get vaccinated. Building respect and trust within and across communities is necessary before rolling out any plans, requests or orders.