Centering Social Justice for Covid‐19 Resources and Research – Brown – 2021 – Hastings Center Report

Other Voice

In offering insight into developing guidelines for the creation and implementation of crisis standards of care (CSC) in this issue of the Hastings Center Report, neither MaryKatherine Gaurke and colleagues nor Alex Rajczi and colleagues confront the impact of lifetimes of structural racism and the resulting inequitable distribution of health and health care between and among communities. Moreover, they do not offer a collaborative process for remediating such inequities.

While Gaurke et al. implore readers to remember that “[w]hen the circumstances are dire, we need our fundamental ethical principles more than ever,”² Rajczi et al. turn to the “will of the majority”³ to settle matters of justice without addressing how society ought to respond when the will of the majority violates the fundamental rights of those in the minority. Neither article offers a comprehensive analysis of a just allocation of scarce resources—one “rooted in a collective agreement about what constitutes health in/justice.”⁴ These articles reflect a larger problem in bioethics: the field’s praxis continues to fail to recognize and respond to the obligation to address the fair distribution of burdens and benefits that comes with the principle of justice. More specifically, bioethics fails to discuss for whom, by whom, and how the distinctions regarding justice as social justice are to be drawn.

What Bioethics Owes Justice

In 1993, Albert Jonsen wrote that “[m]odern bioethicists react to medicine, medical technology, and health care services with peculiarly American concerns about the rights of individuals, fairness and equity in access to benefits.”⁵ Still today, however, this reactive response does not include grappling with the fact that we live in a society where power plus privilege (read this as the proximity to Whiteness and the privilege it bestows) conspire to distribute advantages, including health and health care, differently among individuals and communities due to race, class, gender, and ability.⁶ Nowhere has this inequitable distribution been more evident than in the Covid-19 pandemic.

Gaurke and colleagues remind bioethicists that we ought not abandon our “adherence to the standard duties of beneficence, respect for persons, and justice.”⁷ Of these, the duty to justice requires further explication. Does bioethics’ current conception of justice reflect lifetimes of structural inequality and the resulting inequity that continues to contribute to inadequate opportunities for equitable health and health care for Black and Latinx communities? No, it does not.

Transforming Justice into Social Justice

The Belmont Report not only articulates the moral demands of research but also sets out basic ethical principles for a better way of doing bioethics generally. It offers a conception of justice as not only fairness but also social justice. “Social justice,” the report establishes, “requires that distinction be drawn between classes of subjects that ought, and ought not, to participate in any particular kind of research, on the ability of members of that class to bear burdens and on the appropriateness of placing further burdens on already burdened persons.”⁸ This conception of justice, offered over forty years ago, should have moved bioethicists’ understanding of justice beyond the individual level to a formation of justice as social justice, and arguably a conception of community engagement. The Belmont Report calls upon bioethicists to reimagine their praxis as social justice.

Traditionally, bioethicists’ gaze from the ivory tower has not included community stakeholders (for example, persons with lived experience, those who support or care for them, and advocacy organizations) at the decision-making table. We did not cocreate solutions to pressing ethical issues raised by Covid-19, such as the equitable distribution of personal protective equipment, vaccine testing, vaccine distribution, or the allocation of intensive care unit beds and ventilators. Covid-19 laid bare the inequalities confronting communities of color, and social justice demands that we alter our position from one of a benevolent yet paternalistic protector to that of partner and collaborator with those communities.

Toward a Framework for Community-Engaged Praxis

Such collaboration is essential to the work of social justice in both the clinical and research settings. Developing CSC without direct community collaboration reinforces structural inequality—the pattern and practice built into social systems (such as those of government, education, religion, and health care) that differently advantage members’ roles, functions, decisions, rights, and opportunities to engage in the equitable distribution of social benefits. While numerous Covid-19 research studies have been and will continue to be implemented over the next months and years to come, much research is likely to occur without the input of the communities directly affected. Bridging research and practice as they relate to racial and ethnic disparities and speeding up the translation of knowledge are critical steps to achieving health equity. The cocreation of CSC with community stakeholders, whether the standards were focused on treatments, vaccines, or novel community-engagement strategies, could set a new gold standard for the practice of social justice in research. To achieve engaged, collaborative, and transparent practice, bioethics ought to incorporate a community-based participatory research (CBPR) framework as part of its praxis. Trust cannot be restored where it has never been established, and the enactment of an ethically inspired CBPR framework is essential to building trustworthy community-forward solutions.

CBPR uses a partnership approach that involves a range of stakeholders, including community, academic, and organizational members, in all aspects of the research life cycle. This collaborative process recognizes the inherent value and strengths of its members in the research process and uses a shared governance model in the development of accountability and responsibility. CBPR incorporates the knowledge gained from this process to improve the health and health care of the communities being served.⁹

CBPR reflects a social justice practice, one that could transform bioethics’ current response from one of protecting (a paternalistic position) to one of partnering (a collaborative position). Bioethics’ imperative, what it owes social justice, demands the development of a counter story, one that no longer views racial and ethnic minority communities as burdened by their race or ethnicity or their distrustful stance toward medicine but rather as enclaves that “live in risk” as a result of complex, integrated, and overlapping social structures and economic systems.¹⁰ It is not the color of one’s skin but the system, the structure of inequality in which one lives, that creates the burden. In shifting our understanding of communities, bioethicists move to forming strengths-based interactions and solutions.

The field of bioethics must shift its praxis toward community engagement because, without it, we further burden the already burdened.