Black communities may fear being used as guinea pigs for novel experiments

COVID-19 vaccination rates have shown variation along demographic lines, particularly markedly in communities of color. However, this variation is complex and is underscored by a structural problem driving the lack of vaccine adherence among marginalized populations. The Kaiser Family Foundation (KFF) August 18, 2021, report classifies the race and ethnic groups for 58 percent of people who have received at least one dose of the vaccine. Across this 58 percent spectrum, two-thirds were White, 10 percent were Black, 17 percent were Hispanic, 6 percent Asian, 1 percent were American Indian or Alaska Native, and less than 1 percent were Native Hawaiian or Other Pacific Islander; while 8 percent reported multiple or other races(s). (KFF, August 18, 2021). As seen in Figure 1, there are stark differences across racial and ethnic composition of vaccine adherence in COVID-19 vaccination rates.

In Figure 1, there is a huge racial and ethnic divide regarding disparities in vaccination adherence and it is evident that state variances also occur where some states have a decreased racial divide in vaccine adherence versus other states. It is evident that not only has race or ethnicity shown a disparity in vaccine adherence, but also, supply, access, and distribution of vaccines have shown significant gaps across neighborhoods and communities in the United States.

SOURCE: KFF – Figure 1

Within the United States, it is evident that there are decreased and disproportionate levels of vaccination access in certain zip codes and geographical neighborhoods which tend to be communities of color and underserved communities with vulnerable and at-risk populations.

Data suggests that at least 155 million people in the United States are vaccinated against COVID-19; while this shows some progress, there are still large obstacles to ensuring equitable access for every American because of societal and structural challenges. There are two issues at hand as regards disparate vaccination adherence rates across races and ethnicities –– vaccine hesitancy and mistrust of the science and structural access issues to COVID-19 vaccines. 

Vaccine hesitancy

The legacy of vaccine mistrust continues to plague communities of color given the history of fear stemming from minority experience and anecdotes with respect to experimental clinical medicine and scientific research. Many Black families are aware of various unethical clinical research trials performed in the past such as the Tuskegee Syphilis Study coupled with the provenance and impact of HeLa Cells and the lack of consent and knowledge from Ms. Henrietta Lacks prior to use. All these have raised issues of wholesale violation of privacy and patients’ rights in how healthcare systems have dealt with communities of color. These past historical events continue to cause fear, mistrust, and hesitancy regarding medical care and COVID-19 vaccination adherence.

Such studies mentioned above have violated bioethical principles of research such as respect for autonomy, nonmaleficence, and research justice for the clinical trial research participants. This demonstrable lack of ethics and lack of respect in treatment of Black communities within the unethical Tuskegee Study and the HeLa cell utilization for research have created a persistent behavioral gap in trust, inducing fear of the medical  industry and scientific research systems among communities of color.

Unfortunately, in addition to the unethical clinical research conducted on marginalized populations, there is also a glaring lack of racial and ethnic representation and diversity across the medical and scientific workforce. Furthermore, there are shortages of medical providers and scientists working to provide effective communication in dispelling misconceptions and working to engender trust in the healthcare system from communities of color.

Consequently, there is a palpable concern that communities of color may be targeted as guinea pigs for experiments not proven to be safe for the general population. However, this is not true with the covid vaccination, and the challenge stakeholders must deal with is debunking this fear among communities of color.

Apart from the negative domestic antecedents highlighted above there are also controversial cases that have occurred globally. Pfizer has had clinical trial misconduct allegations and lawsuits such as the 1996 clinical trial in which the company administered their oral antibiotic drug – trovafloxacin (Trovan) to children in Nigeria. Within this clinical trial, Pfizer never obtained informed consent from sick children’s parents and children who failed to adhere to the study protocol developed extreme adverse healthcare conditions––brain damage, hearing loss, and unfortunately, mortality. Pfizer was hasty in setting up the clinical trial so it could be one of the largest pharmaceutical companies to innovate a new ‘drug’ during the meningitis epidemic.

Vaccination barriers are multilayered, and it is imperative for the US to remove vaccination barriers at both the misconception-perception layer and the societal access layer

In its rush to deliver a drug to children in Nigeria, it is alleged that Pfizer administered unethical clinical research. This case shows the importance of pharma-clinical research trial design and protocol safety efficacy within innovative drug delivery. Therefore, the ramifications from 25 years ago within the Trovan Trial by Pfizer, still causes global vaccine hesitancy because of the apparent rush to bring the COVID-19 vaccine to market.

One way this can be mitigated is through improved communication and awareness regarding the clinical research quality assurance phases of the end-vaccine product and more transparency with regard to the quality assurance and quality control to-market strategies of the COVID-19 vaccine.  The enumerated domestic and global issues concerning lack of ethics factoring into clinical research and clinical trials among marginalized populations have instigated a gap in vaccine hesitancy and built up mistrust, fear, and misconception towards the healthcare and scientific industries. 

Indeed, there are ‘hesitancy hotspots’ in communities of color but there are also structural or systematic inequity issues which drive persistent barriers to vaccines and vaccination supply and delivery, which also cause vaccination rates to be stagnant and lower among marginalized racial and ethnic groups. Thus, it is imperative to enhance policy to fix the impediments linked to inequitable vaccine distribution within the United States. It is crucial to drastically improve access to COVID-19 vaccines for communities of color as many individuals of color want to be vaccinated and be protected against the virus. However, structural barriers continue to deter COVID-19 vaccination among marginalized populations.

Structural access issues

Indeed, there are significant gaps in COVID-19 vaccine adherence due to socioeconomic disparities which promote inequitable access to vaccines. It is evident that physical barriers to vaccine access militate against vaccine adherence across communities of color.  Societal and structural issues of accessibility due to transportation challenges, spatial challenges, opportunity cost resulting from time-off work due to vaccine appointments, and distances between healthcare sites administering vaccines to where communities of color live and work have been drivers of vaccine inaccessibility.

A solution to this impediment is to forge partnerships between community health workers and government, academic, and healthcare institutions to identify where geographic barriers to vaccine access persist; and to help ensure adequate -to- optimized transportation and vaccine coverage for these neighborhoods.

One innovative way to bring vaccines to marginalized communities is through mobile vaccination units and/or walk-up and drive-through ‘pop-up’ sites where vaccine access can be more equitable for underserved communities who have to travel far distances (multiple times for two-dose shots) just to have access to a COVID-19 vaccine. Thus, socioeconomic and geographic barriers to vaccine access have also been a significant driver of the racial disparities in vaccine adherence and the limitations of vaccine uptake among minority populations.

As we grapple with the growing number of breakthrough infections and COVID-19 variants and need for booster shots, it is important to start strategizing vaccine implementation plans more effectively to engender equity and accessibility by all races and ethnicities. To do this we must utilize community partners, local community leaders and grassroots organizations as agency to bridge the gaps between marginalized people who are at-risk and delivery of the booster vaccine via the medical system supplying the vaccine to communities. It is also critical that local, county, state, and national governments and public health departments work together to ensure optimized and efficient delivery of vaccine by limiting politicization and focusing on improved equity of vaccine access and scaling of operations in the administration of the booster dose.  

Through the interplay of government, community-based organizations, healthcare leaders, public health professionals, and community healthcare workers there can be improved strategies to eliminate the barriers for high-risk, underserved (urban and rural) communities to vaccine access. Mitigation of these barriers (i.e., geographical, language, scheduling, and technology) will promote more equitable vaccination access. By eliminating barriers and gaps that disproportionately affect communities of color, there will be a dramatic improvement in vaccine adherence in relation to underserved communities of color within the United States.  

Vaccination barriers are multilayered, and it is imperative for the US to remove vaccination barriers at both the misconception-perception layer and the societal access layer in order to improve vaccine equity and ensure healthier outcomes across all communities within the country.

**Edited by Olurotimi Osha

About the author: Luyi Adesanya has a Biological Sciences degree from the University of Chicago and is also a graduate of Washington University in St. Louis. She is an epidemiologist.