From Paternalism to Engagement: Bioethics Needs a Paradigm Shift to Address Racial Injustice During COVID-19

This article refers to:

Race, Power, and COVID-19: A Call for Advocacy within Bioethics

COVID-19 has disproportionately affected ethnic minorities and migrants, not only through an increased risk of infection and death (Pan et al. 2020), but also through experiences of harassment, marginalization, and exclusion (He et al. 2020). By exacerbating or creating vulnerabilities, the pandemic has aggravated racial injustices.

Against these realities, Mithani, Cooper, and Boyd (2021) advocate for a proactive bioethics that resists systemic racial injustice. Even when the discipline appears to engage with vulnerabilities rooted in race, the way it does so can perpetuate inequality. For instance, Mithani, Cooper, and Boyd (2021) point out that there is little consideration of structural racism in debates on whom to recruit for COVID-19 human challenge studies. Plotkin and Caplan’s (2020) suggestion of potentially including people who are at high risk for SARS-CoV-2 exposure due to their work or living arrangements is a prominent example of this gap, given that members of minority groups disproportionately inhabit or work at places with a high risk of viral exposure (Krieger 2020). Mithani, Cooper, and Boyd (2021) explicitly reject this suggestion.

Bioethical prescriptions for including or excluding racial minorities from clinical trials risk perpetuating unequal power relations, especially in the absence of prior engagement. In this commentary, we extend Mithani, Cooper and Boyd’s (2021) work with examples that highlight the centrality of minority voice for addressing injustice. Bioethicists could play a key role in curating a diversity of minority perspectives to guide pandemic research and policy recommendations. Such voices may speak the language of community interests, as well as that of the general public good (Raman et al. 2018). Efforts to engage could also address the paternalism of bioethics guidelines toward individuals or groups deemed vulnerable (Bracken-Roche et al. 2017).

A paradigm shift in bioethics would begin with a recognition that vulnerable individuals and groups are not voiceless entities who lack the capacity to decide what is good for them—or indeed, for wider society. It is time to move on from a “deficit” model (Moynihan et al. 2012), wherein bioethicists make assumptions about what is best for vulnerable minorities. The alternative is a model where we acknowledge the lived experience of minorities and engage with them. This will better determine how to best ameliorate vulnerabilities and injustices that minority groups experience and help achieve individual, communal, and public good.

To further illustrate the value of an engagement model for bioethics, we describe examples from Minnesota (USA) and Australia. Lessons from these can be used in designing activities to engage racial minorities during a pandemic and beyond.

The Minnesota Pandemic Ethics Project (MPEP) was conducted to develop ethical frameworks for state-wide rationing of health resources in a severe influenza pandemic. Recommendations were developed over 10 months through monthly meetings of a panel of 45 Minnesotans, including “public health professionals, ethicists, health care providers, representatives from faith communities, neighborhood organizations, health plans, emergency responders, law enforcement, the court system, and advocates for people with disabilities, seniors, and children” (Garrett et al. 2011). The panel was supported by experts on resource allocation, ethics, and implementation. Public engagement activities were also conducted to provide the community opportunities to review and respond to the panel and expert groups’ preliminary ethical framework. Local partners, such as public health agencies serving homeless people and disaster victims, an Indigenous health organization, and clinics and other community organizations servicing ethnically-diverse neighborhoods, helped in publicizing the events, recruiting participants, and/or selecting the activity format. Ethical objectives for rationing, prioritization of various groups in resource rationing, and guidelines for alleviating access barriers were explored in these activities. Native Americans, Pacific Islanders, and people identifying as Black or Latinx were represented in these events (Garrett et al. 2011).

Interestingly, the panel from the MPEP suggested that a severe pandemic is not the appropriate time to redress historical injustices in healthcare. They argued it is more important to prevent exacerbation of health disparities, protect the population’s health, and protect public safety and social order. According to Garrett et al. (2011), socially vulnerable participants in the community forums and small group discussions suggested that resources should first be directed to critical infrastructures that they heavily rely on. They also expressed concerns that prioritizing them over key workers and high-risk groups could lead to further stigma and marginalization (Vawter et al. 2011). Participants in the MPEP’s activities also appreciated the opportunity to learn more about pandemic influenza, understand the complexity of pandemic-related policy making, and provide input. An ethics modeling project is different from a COVID-19 human challenge trial in multiple ways, but the MPEP participant rationales for participation and their identification of the benefits show that minorities, including potentially vulnerable individuals, can think for their own and for the collective good (Raman et al. 2018).

COVID-19 communication efforts in Australia represent another example of how engaging with racial minorities can help achieve better pandemic outcomes. First, Finlay and Wenitong’s (2020) work shows how Aboriginal Community Controlled Health Organizations have played a lead role in effective health communication in controlling the pandemic in Indigenous communities. Second, Wild (2020) and her colleagues collaborated with leaders from Victoria’s multicultural communities to identify ways to best communicate health information on COVID-19. They found that the use of ‘high Arabic’ in the COVID health information provided by the government to the Victorian South Sudanese community ignored the fact that there are several South Sudanese languages being spoken in Melbourne and that only a minority can speak and write Arabic (Wild 2020). This underscores the significance of not just translating COVID-19 information into other languages, but also partnering with community leaders to account for context (Wild et al. 2020). Wild et al. (2020) noted the crucial role of culturally and linguistically diverse (CALD) religious and community leaders in relaying information to community members via specific messaging and online platforms, modeling and promoting desired behaviors, and providing online avenues for religious practice. They also highlight the importance of sensitive communication to prevent stigma. Melbourne’s initial responses to COVID-19 risked marginalizing and even stigmatizing some minority groups. But with greater community engagement, Melbourne’s highly multicultural population has been successful in reducing COVID-19 infection rates via consistent public compliance with stringent government control measures.

These examples demonstrate ways in which racial minorities can both engage and be engaged with to co-create improved pandemic policy and response. At present, efforts to gauge public opinion on COVID-19 human challenge studies are scarce. Though the WHO Working Group on COVID-19 human challenge studies has emphasized the importance of public engagement to gauge their acceptability (Jamrozik et al. 2020), there was no mention of engagement with socio-economically vulnerable groups or racial minorities. With limited efforts to engage, bioethics may once again end up speaking “for” rather than “with” racial minorities, thus perpetuating extant power relations. Considering the disproportionate morbidity and mortality of COVID-19 on racial minorities, particularly in the USA and UK (Pan et al. 2020), minority groups may well decide there is a critical need to determine the race-specific factors underlying this disparity or the efficacy of various interventions. Currently, Black and Latinx populations are underrepresented in multiple COVID-19 clinical trials (Chastain et al. 2020). Advocating for the automatic exclusion of some bioethically-labeled “vulnerable” racial minorities in COVID-19 studies, even if they have sufficient capacity to understand the trial’s nature and provide consent, can further increase the knowledge gap on how SARS-CoV-2 affects minority bodies and on the safety and efficacy of various COVID-associated interventions for people of color. Bioethicists should provide a platform for racial minority populations to deliberate on how they think this knowledge gap could best be filled and on how clinical trials involving them could be conducted in a just, responsible, and culturally-sensitive manner.

It is time for a paradigm shift in bioethics. To address racial injustice, bioethics must encourage and allow racialized minorities to partake in bioethical discourse about pandemic planning and response, similar to what Vawter et al. (2011) and Wild et al. (2020) have performed. In addition to counter storytelling (Mithani, Cooper, and Boyd 2021), bioethicists and funding bodies for bioethics projects should pursue and support, respectively, projects that aim to directly engage with racial minorities. Achieving this requires interdisciplinary collaboration; and bioethics can draw from existing frameworks and established tools in fields such as anthropology, responsible innovation (Viaña, Raman, and Leach 2020), sociology, public engagement, science communication, and social work. Finally, it is vital for bioethics not just to reflect on and study minorities, but also empower bioethicists of color to share their lived experiences of racialization, marginalization, and exclusion and their perspectives on how these can be addressed. These will ensure that bioethics does not just write about redistributing power and promoting social justice, but rather practices it by actively creating opportunities for racial groups experiencing injustice to have their voices heard and preferences upheld.