Bioethics Must Exemplify a Clear Path toward Justice: A Call to Action

Introduction

Fabi and Goldberg (2021) raised important considerations regarding both research and funding priorities in the field of bioethics, and in particular, the field’s misalignment with social justice. While we agree that funding is one of the main drivers of an academic’s field’s priorities, we argue that the field of bioethics must first lead the charge by demonstrating a commitment to social justice and anti-racism in bioethics. Shifting social justice to the forefront of funding priorities thus requires reprioritizing what ought to be central to the mission and vision of bioethics. This shift also demands deeply examining the field’s historic and contemporary structures, practices, and norms that inhibit bioethics issues from gaining academic visibility and prominence.

Fabi and Goldberg highlight the paucity of bioethics funding directed towards ethically examining the structural causes of persistent health inequities, including addressing how Black women are 243% more likely to die from preventable prenatal complications in the US (Adams et al. 2017; McLemore 2019). We argue that a lack of allocated bioethics funding to address this national public health crisis (National Heart, Lung, and Blood Institute, “Systemic Racism, a Key Risk Factor for Maternal Death and Illness”) is reflective of the field’s historic and current moral failure to prioritize health and health care inequities. Arguably, the foundational framing of bioethics neglects the lived experiences, dilemmas, distress, and collective trauma experienced by minoritized individuals and communities as a direct result of structural injustice.

Scholars maintain that bioethicists should be concerned with the moral experience as a framework of inquiry to fully capture what is ethically at stake and of value to both individuals and communities (Hunt and Carnevale 2011; Ray 2021). Indeed, bioethicists have a duty to illuminate the moral experiences and realities of those disadvantaged by structural racism (Danis et al. 2016) and other forms of systematic marginalization. Thus, we contend that the field of bioethics must exemplify a clear path towards justice and demonstrate the urgent need for funding that prioritizes equity concerns underrepresented in the field. The remaining sections are examples of why the field of bioethics must lead this charge with justice at the fore.

Existing Structures Disadvantage Scholars of Color

Fabi and Goldberg maintain that current funding priorities deemphasize areas of inquiry of greatest interest to scholars of color and impose further disadvantage. While funding priorities—especially those priorities that lack an equity and anti-racism focus— may in fact limit opportunities for scholars of color engaged in justice-centered bioethics work, we argue that solely holding funders accountable for disadvantaging scholars of color is short-sighted at best. As a field, bioethics must critically interrogate its longstanding role in perpetuating structural injustice among scholars of color and limiting the field’s growth through its failure to embrace the “full breadth of talent, expertise, and perspectives” (Centers for Disease Control and Prevention, “Racism is a Serious Threat to the Public’s Health”) needed to move the field forward in justice. As indicated by Thomas and colleagues (2021), cultivating and adopting diversity as an ethos requires confronting the norms and practices that produce such inequitable outcomes.

Admittedly, scholars of color are leading critical conversations around diversity, equity, and inclusion (DEI) on the national level (“Critical Moment in Bioethics: Reckoning with Anti-Blackness through Intergenerational Dialogue”). However, the urgency for racial justice and equity has imposed additional responsibilities and burdens on scholars of color (Ray 2021), namely expectations around leading and engaging in DEI efforts— work that is traditionally unpaid, uncredited, and unnoticed. It is worth noting, however, that despite historical and ongoing structural barriers, scholars of color are successfully navigating the field of bioethics in innovative ways.

In the Face of Injustice, Scholars of Color are Leading the Way

Fabi and Goldberg (2021) applaud the Greenwall Foundation for their demonstrated commitment to funding bioethics scholarship focused on health disparities, public health, and health care. Admittedly, as compared to other funding agencies, Greenwall is highly regarded for funding bioethics scholarship that is significantly more varied in terms of scope. However, the lack of grants awarded to scholars of color (“The Greenwall Foundation, Faculty Scholars Program”) is undoubtedly incongruent with national efforts to foster racial justice, diversity, equity, and inclusion in the field of bioethics. Aligned with NIH’s commitment to address structural racism, we challenge Greenwall and other bioethics funding agencies to systematically evaluate and critically reflect on the structures and processes that “perpetuate exclusion and inequity based on race” (National Institutes of Health, “Ending Structural Racism”).

In the absence of the field’s leadership around issues of social justice, bioethics scholars have successfully secured funding to through programs such as the HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI) at Fordham University (Fordham University, “HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI)” to conduct research with populations that experience intersectional marginalization. The HIV and Drug Abuse Prevention Research RETI now in its tenth year, led by Dr. Celia Fisher (Supported by the National Institute for Drug Abuse Grant #R25DA031608) has been instrumental in shaping the field’s priorities by selecting scholars with expertise in health equity and anti-racism, but also ensuring fair inclusion and elevation of scholars of color. The program provides empirically focused training to equip early career investigators with the knowledge and skills to conduct ethically sound research with structurally vulnerable and disadvantaged populations (i.e., HIV positive populations, drug using populations). Fittingly, many RETI scholars of color are leading research that engages minoritized communities and stakeholders to understand their needs, preferences, and priorities (Fletcher et al. 2019) to inform ethical practice and policies. By centering the voices and lived experiences of participants burdened by health inequities, RETI scholars are advancing and broadening research ethics scholarship by bringing justice to bear—a much needed shift in the field.

To address funding deficits and blind spots in the field, bioethicists of color have sought out other funding opportunities and sources to support their justice-focused bioethics agendas. Importantly, foundations such as Society of Family Planning (SFP) have established grant programs focused exclusively on supporting scholars of color. The aim of the Changemakers in Family Planning grant is to “respond to institutionalized racism in the field of family planning by providing dedicated support for awardees to expand research skills and expertise” (“Society of Family Planning & SPF Research Fund”). Perhaps not the intended goal of the program, the SFP Changemakers program has offered scholars of color, including bioethicists of color (Brownsyne Tucker Edmonds, MD, MPH, MS; Jennifer James, MSW, MS, PhD; Faith E. Fletcher, PhD, MA)— the infrastructure to engage in reproductive justice and structural racism scholarship—areas underrepresented in the field of bioethics. Notably, scholars of color are curating their own paths, but should not be responsible for cultivating anti-racism and equity scholarship while also changing institutional culture. There remains a critical need for training structures and funding mechanisms to support and amplify the work of bioethicists of color, in particular.

Conclusion

Intentionally facilitating safe and equitable spaces for scholars of color, combined with the strengths of those from disciplines beyond bioethics, should be among the field’s priorities. Fostering sustainable change requires actionable commitment even when paths are seemingly uncharted. This also means if the field is truly committed to anti-racism and justice, then strategic and sustainable efforts are required to diversify the field’s priorities, methodologies, frameworks, and praxis which can ultimately aid in diversifying funding priorities. The field of bioethics ought to work towards elevating social justice to its rightful place, and advocate for funding that prioritizes the moral experiences of individuals and communities affected by long-standing inequities. We cannot hold funding agencies accountable for not aligning their funding priorities with social justice if the field itself has not prioritized justice. Bioethics must exemplify a clear path towards social justice. The field’s future depends on it.