Rethinking the Moral Authority of Experience: Critical Insights and Reflections from Black Women Scholars

Introduction

The field of bioethics is calling for a new generation of scholars equipped with the normative, empirical, and practical knowledge and expertise to prioritize equity concerns largely underrepresented in bioethics discourse, research, and practice. In the target article “Bioethics and the Moral Authority of Experience” by Nelson and colleagues (2022), authors state that “experience has the potential to color one’s perspective in ways that, we argue, can be epistemically disadvantageous”. While we acknowledge that various types of experiences—both professional and personal—may present a range of complexities in bioethics practice and deliberation, we urge caution in advancing perspectives that may undermine contemporary efforts in bioethics intended to foster more inclusive and equitable practices in the field. Importantly, we respectfully challenge the notion that personal or lived experiences has the potential to be epistemically disadvantageous or even a liability by highlighting critical reflections grounded in knowledge and scholarship generated by justice-focused scholars of color. In this response, we offer the following standpoints for consideration in bioethics discourse: 1) knowledge and experience of all forms should be justly valued (i.e., dismantle the hierarchy of knowledge); 2) the insider perspective should be valued while appropriately acknowledging inherent biases embedded in bioethical inquiry and practice; and 3) shared power and authority between bioethicists and other stakeholders should be prioritized over the moral authority of experience.

The Hastings Center Report, March/April 2022 – Special Issue – “A Critical Moment in Bioethics: Reckoning with Anti-Blackness through Intergenerational Dialogue” highlights the contributions of Black scholars and women working in the field of bioethics, and the relative lack of attention given by the field to matters of racism and social justice (Fletcher et al. 2022). The report also seeks to increase and amplify diverse voices and prioritizes underrepresented issues within bioethics such as health equity and racial and social justice. In this seminal report, we call on bioethicists to redress several oversights in the field’s work, including “lack of inclusion, engagement, and ethically appropriate crediting of bioethicists of color who have historically written on topics” now receiving attention in mainstream bioethics (Fletcher et al. 2022, S4). Notably, several articles in the Special Report support the claim that a failure to acknowledge the lived experiences of certain groups and scholars has historically perpetuated structural racism and oppression in the field of bioethics (Fletcher et al. 2022; Bogdan-Lovis et al. 2022; Wallace 2022). Thus, in this commentary, we briefly highlight these articles and their calls to action to underscore bioethicists’ moral and professional obligation to collectively work towards transforming the field through scholarship and practice that frames “braver, bolder, and broader bioethics” (Fletcher et al. 2022, S4). This critical reframing requires both centering and integrating the perspectives, voices, and realities of scholars of color and other stakeholders not adequately represented in bioethics discourse and scholarship.

Bioethicists ought to justly value all forms of knowledge and experience, including lived experiences.

Stated by Libby Bogdan-Lovis, Wendy Jiang, and Karen Kelly-Blake in “On the Shoulders of Giants: A Reckoning with Social Justice”:

There has been a recent, pandemic-linked flurry of Black representation in scholarly bioethics’ articles, in webinars, and on public policy committees. Those current activities admittedly hold promise, although it took the tragedies of the pandemic to bring these scholars to the fore

(Bogdan-Lovis et al. 2022).

Indeed, an explicit focus on anti-racism, particularly anti-Black racism, during the pandemic motivated the guest editors, authors, taskforce members, and other Special Report contributors to build on and amplify the foundational and insightful work of a previous generation of bioethicists (Fletcher et al. 2022). Drawing on interviews with four senior Black scholars—Anita L. Allen, Claretta Y. Dupree, Patricia A. King, and Lawrence J. Prograis, Jr.— Bogdan-Lovis and colleagues highlight the historical exclusion of Black bioethicists and the importance of centering the experiential knowledge of Black scholars from a wide range of disciplines to broaden the bioethics cannon. While their work is now being recognized on the national bioethics stage in this critical moment, interviews with these luminaries reveal that they were once advised in their careers to avoid engaging in racial justice scholarship—work often perceived as too narrow, too closely tied to the identities of Black scholars, and ancillary to the “real” work of bioethics (Bogdan-Lovis et al. 2022). The Special Report calls to attention the field’s failure to acknowledge and embrace the scholarship, achievements, efforts, and voices of Black scholars working in bioethics.

In response to this and other recent calls to amplify the voices of those who have been historically silenced, we assert that framing personal or lived experiences as potentially epistemically disadvantageous as raised by Nelson et al., threatens recent progress in the field of bioethics and discounts the critical importance and value of such experiences in advancing scholarship and practice. Further, we argue that the value of these experiences—lived, encountered, and embodied—is well-documented by phenomenology theorists and other justice-focused scholars, namely health equity scholars and Black feminists (Collins 1986; Collins 1999; Wilson 2022; Thomas 2022; James 2022; Creswell and Poth 2013; Dreyfus and Wrathall 2006; Best 2022; Fletcher et al. 2019; Gunn 2022). These scholars argue and demonstrate through a well-established body of work that lived experiences offer a philosophical and methodological edge absent from philosophical standpoints that may be derived from detached, objective, or disengaged statuses (Pathak 2017).

Bioethicists ought to value the insider perspective in bioethics inquiry and practice.

Black women have long occupied marginal positions in academic settings. I argue that many Black female intellectuals have made creative use of their marginality—their “outsider within” status–to produce Black feminist thought that reflects a special standpoint on self, family, and society

(Collins 1986).

Drawing from work by Patricia Hill Collins, we consider ourselves both insiders and outsiders, occupying multiple social identities and statuses—including statuses that are both marginalized and privileged in various societal contexts and spaces. Our overlapping statuses as academicians, researchers, Black women, among other social identities lend unique insights, strengths, and vulnerabilities in our professional and personal lives. For example, despite occupying privileged social positions (i.e., academician, researcher), the Hastings Center Special Report highlights the lived experiences and insights of Black women scholars navigating dangerous birthing situations in U.S. health care settings (Thomas 2022; James 2022). We argue that documenting harm experienced by scholars of color—harm similarly experienced by the populations that we seek to serve—is critical to advancing the work of bioethics. The value of bioethicists engaging those most affected by the issue to inform meaningful scholarship, practice, and discourse is further supported by conversations held with Black health activists and community organizers for the Special Report (Wallace 2022). Based on dialogue with community experts, Wallace concludes that without appropriately engaging diverse stakeholders, “the field of bioethics is bound to uphold White supremacy, advance colonialism, and neglect complex ways of being in the world” (Wallace 2022).

Bioethicists ought to value shared power and shared authority in bioethics discourse and deliberation.

The standpoints described in the previous sections challenge the idea of the moral authority of experience as equitable and ethical. Traditional, often utilitarian, efforts to promote diversity and inclusion may facilitate knowledge and information sharing, but they fall short of transferring the necessary power and the needed decision-making authority to act upon information, inhibiting social justice (Bruton et al. 2017). In the Hastings Center Special Report, Best describes the importance of centering Black scholars in positions of power to make decisions related to funding, leading, and implementing health equity research (2022). Best asserts that the perspectives of scholars of color are vital across the entire research process as their insights are instrumental in helping to contextualize the macro-level determinants of health inequity, such as anti-Black racism and power imbalance. Similarly, Gunn highlights that the qualitative interview process can serve as a liberating endeavor for members of marginalized communities to illuminate the injustices they have experienced. This is more likely to occur if the study is designed by researchers and conducted by interviewers who employ an anti-oppressive, antiracist lens of inquiry (Gunn 2022). Lived experiences can also assist scholars in appropriately identifying and mitigating potential harmful consequences that might further stigmatize and retraumatize priority populations (Crooks et al. 2021; Gunn 2022; Fletcher et al. 2019). Likewise, those involved in bioethics discourse and deliberation should respectfully engage stakeholders and priority populations in practices that leverage their experiences and realities to inform decisions tailored to the complex needs and preferences of the affected populations.

Conclusion

In short, as intersectional scholars engaging in interdisciplinary research and practice (i.e., public health, health equity, and bioethics), we challenge the notion that one should be granted moral authority over any given population’s narrative, information, or health related decision-making. If one has a vested interest in the well-being and social uplift of a population, then gaining moral or other forms of authority over individuals or groups is misaligned with those justice-centered goals. Further, bioethicists should not only challenge claims that one person or group has moral authority over another, but as part of our ethos, we should work to dismantle all threats to justice, including knowledge gatekeeping. As scholars deeply committed to social justice work, we ascribe to the values of humility, transparency, co-learning, and co-creation of knowledge. We believe that a mix of both professional and personal knowledge and expertise is critically important to inform bioethics discourse and ethically grounded decision-making. To be clear, advocating for the inclusion of lived or personal experience does not devalue the importance of professional experience. These ideas and actions are not and should not be interpreted as mutually exclusive. Arguments that support and perpetuate the existence of knowledge as hierarchical are misaligned with recent efforts and frameworks that reject harmful power structures and dominant narratives that uphold and sustain inequity (“Advancing Health Equity: A Guide to Language, Narrative and Concepts”). Finally, if we are truly committed to social justice, we must employ practices that help us to interrogate the social construction of knowledge and authoritative perspectives that shape the field’s discourse, practice, and priorities (Fletcher et al. 2022). Failure to do so will result in critical misunderstandings that undermine efforts to advance health and social equity.