This editorial can be found in the September 2024 issue of the American Journal of Bioethics
In their examination of survey findings, Pierson et al. illuminate critical insights into the current composition and philosophical perspectives of the bioethics field. Their study addresses a significant gap in the systematic understanding of bioethicists’ backgrounds and perspectives on key issues, highlighting the profound impact that normative ethical frameworks have on professional viewpoints. By juxtaposing these survey results with public sentiment, the authors expose potential dissonances between expert opinions and societal opinions, suggesting the need for closer alignment. They compellingly argue for increased diversity within bioethics, asserting that a more inclusive field is essential for comprehensively addressing ethical challenges, particularly those affecting marginalized communities. These findings present a unique opportunity for reflection on fundamental questions: What is bioethics, and whom does it serve?
To capture a wide spectrum of the field, the authors drew from two leading bioethics organizations. However, as they acknowledge, the representation of views through this survey is limited by the unique characteristics of these organizations. For example, the Association of Bioethics Program Directors (ABPD n.d.) is an organization for leaders of academic bioethics programs across North America, with its membership comprising of directors of bioethics departments, centers, and institutes within universities and healthcare institutions. As ABPD President, I work with the ABPD Board of Directors to advance our mission of fostering collaboration, sharing best practices, and strengthening the role of bioethics programs in addressing complex ethical issues in medicine and life sciences. Given our focus on bioethics program leaders in their roles of center directors, department chairs, and division heads, our membership reflects a relatively small proportion of bioethicists and it is likely that many who engage in research and clinical ethics are not represented in the survey data.
Despite these limitations, the survey results confirm several well-known aspects of the field. Scholars have provided valuable accounts of the origins and evolution of bioethics, shedding light on its status as a relatively young discipline. This historical context may help explain the survey’s suggestion that bioethics is largely shaped by a narrow range of disciplinary perspectives, dominated by scholars who are predominantly white, from highly educated backgrounds, and employed in academic medical centers and institutions. In this respect, bioethics mirrors other academic disciplines, including the sciences that are the object of bioethical investigation. Yet, as the authors suggest, the central role of bioethics in identifying and interpreting values in the moral experiences of health and disease warrants critical examination, especially in confronting epistemic gaps within the field.
A quarter of a century ago, Daedalus, the Journal of the Academy of Arts and Sciences, published a special issue titled “Bioethics and Beyond,” guest-edited by Kleinman, Fox, and Brandt. The editors argue for a multidisciplinary approach to bioethics, one that addresses the “gap between theoretical and practical ethical considerations in medicine” and recognize the importance of navigating “the space between ‘is’ and ‘ought,’”—the critical territory defined by the questions “What is the existing situation?” “What should be done about it?” and “What can be done?” to “speculate on future possibilities for inquiry and action at the critical sites of suffering and care.” (2001, IX).
Kleinman, a medical anthropologist and psychiatrist, critiques the dominance of abstract, principle-based bioethics, arguing that such an approach often overlooks the lived experiences and cultural contexts of individuals. He contends that ethical positions must consider the localized politics of a particular place—what is at stake within that specific community? Uncovering and articulating sociohistorical contexts and the values that matter most requires empirical research that provides knowledge of experience—knowledge that is not just valuable but essential for bioethics Kleinman advocates for a bioethics that considers the moral lives of people as they navigate health and illness, emphasizing ethnography as an interpretive approach capable of offering deep insights into the complexities of moral experience. This approach enriches ethical reflection and ensures that bioethics remains relevant and responsive to real-world situations that vary across different contexts.
Recognizing the epistemic status of bioethics, the ways in which bioethicists are trained, and how bioethical work is structured within medicine and biomedical research is crucial for identifying and addressing the ethical questions that truly matter. In the same Daedalus volume, Das challenges the field to move beyond its American origins and its primary focus on autonomy and individual consent. She emphasizes the importance of understanding how ethical issues in healthcare are embedded within broader social contexts, such as community relationships and public welfare. Das calls for a bioethics that is more attuned to the everyday realities of people’s lives and that takes into account the collective dimensions of ethical action.
In response to global events that have starkly revealed the devastating impact of racism on human health, the ABPD in 2020 convened a Presidential Task Force on Racial Equity, Diversity, and Inclusion (REDI). Under the leadership of past President Christine Mitchell and co-chaired by Clarence Braddock and myself, the Task Force engaged in two years of rigorous dialogue, culminating in nine recommendations aimed at transforming the field. These recommendations emerged from challenging conversations with leading scholars within and beyond our organization, exploring why bioethics has often failed to address the most pressing questions of justice. As Pierson et al.’s survey makes evident, the field’s limitations cannot be rectified simply by recruiting more Black and Brown scholars. Instead, we must critically examine who is recognized as a bioethicist and, by extension, whose knowledge is valued in bioethics.
The REDI Task Force highlights significant epistemic gaps in bioethics, particularly concerning the field’s historical failure to adequately address racial justice. Despite bioethics’ roots in confronting ethical issues deeply entwined with racism and oppression, the field has largely neglected to center racial equity in its scholarship, pedagogy, and practice. We advocate for a paradigm shift in bioethics, urging leaders to acknowledge and dismantle the systemic racism embedded in the field’s methodologies, funding priorities, and professional networks.
The urgency of this change is further underscored by the persistent lack of racial diversity and anti-racist practices within bioethics programs. Integrating REDI as a central framework within bioethics emphasizes that meaningful progress requires institutional commitment, accountability, and a reimagining of the field’s norms and practices to encompass diverse perspectives and methodologies. The recommendations aim to transform bioethics into a more inclusive and socially just discipline, better equipped to tackle the ethical challenges posed by an increasingly diverse society.
Alignment with public opinion is not the primary objective of bioethics. Like other academic disciplines requiring rigorous training and focused inquiry, bioethics is a specialized field dedicated to employing moral reasoning to raise critical questions and support ethical decision-making. Bioethicists are not tasked with mirroring public views but with clarifying values, articulating the principles underlying ethical dilemmas, and evaluating the consequences of various interventions. Their role is to provide a reasoned analysis that guides society through complex moral landscapes, rather than simply reflecting popular sentiment.
However, the field must be vigilant against epistemic injustice—the harm caused when knowledge, experiences, or insights are unjustly devalued or dismissed due to prejudice or systemic biases. In bioethics, this injustice occurs when the lived experiences of marginalized groups are excluded or undervalued in ethical deliberations and policy-making. Such exclusion not only perpetuates existing inequalities but can produce ethical frameworks and decisions that are disconnected from the realities of those most affected. The absence of lived experience in bioethics results in a narrow and often distorted understanding of ethical issues, thereby reinforcing the very social and health disparities that bioethics aims to address. This epistemic harm undermines the field’s credibility and effectiveness, ultimately hindering its ability to provide a comprehensive and just response to the complex ethical challenges facing diverse societies.
Given the substantial influence bioethicists wield over medical, scientific, and public health policies, the study by Pierson et al. calls for a concerted effort to leverage this influence in advocating for ethical practices that encompass a broader spectrum of perspectives. Ultimately, this research serves as a clarion call for the bioethics community to actively foster equity and inclusivity, thereby enhancing its capacity to navigate complex ethical terrains more effectively and justly.