Posted on February 20, 2019 at 12:13 PM
by Amal W. Cheema, Karen M. Meagher & Richard R. Sharp
Through special arrangement with Taylor & Francis, AJOB posts its editorials on bioethics.net. This essay and the articles it references are also available on the publisher website.
Increasing the visibility of marginalized voices is fundamental to bioethics. Toward this end, various feminist and critical-race theories have provided insights into the experience of disability and illness. Yet as individual frameworks, each of these theoretical vantage points can fall short in capturing lived experiences shaped by multiple marginalizations. The rise of intersectionality as a theoretical framework should prompt bioethicists to consider what an intersectional bioethics might look like and what value such an approach might provide.
Originating from black feminism, intersectionality recognizes that a single classification does not represent an individual enmeshed within a social context, but that the convergence of multiple vectors shapes their lived experience. The convergence of social inequities and marginalizations, like racism, poverty, religious persecution, sexism, or homophobia, produces unique vulnerabilities and social inequities. Recognizing these lived experiences, intersectional work aims to improve our understanding of the complexity of social processes and oppressive vectors affecting illness experiences. For example, in studying intersecting identities, Burton and colleagues demonstrated that racial disparities in birth outcomes among black women were likely manifestations of structural oppression and are congruent with the weathering hypothesis—that the impact of a lifetime of experiences of racism causes health to deteriorate with age.
Building on the rich intellectual heritage of intersectional work, we encourage bioethicists to consider the potential benefits of applying intersectionality theory in empirical bioethics. In this issue, Wilson and colleagues describe the value of intersectionality in clinical medicine, encouraging health professionals to recognize multiple marginalizations faced by patients, and to confront biases that impact clinician–patient encounters. Epistemically, intersectionality recognizes the significance of complex social worlds, illuminating the phenomenological ramifications of social and structural processes of oppression; normatively, intersectionality recognizes the need to elevate authentic narratives that may otherwise be erased from public consciousness. Given its dual empirical and normative aspirations, an intersectional approach aligns nicely with the historical aims of bioethics and might provide a robust foundation for some types of empirical bioethics research.
THREE OPPORTUNITIES FOR APPLYING INTERSECTIONALITY THEORY IN EMPIRICAL BIOETHICS
An intersectional research approach, in brief, holds that a researcher cannot know every person’s unique story or understand the experiences of individuals facing marginalizations and privileges different from their own. In addition to unpacking experiences of oppression, an intersectional research approach seeks to understand how moral values and commitments are shared across complex identities. This renders it a powerful tool for examining how health care can be delivered in a manner that is more inclusive and empowering. Specifically, an intersectional approach could be useful in at least three aspects of bioethics research: setting a research agenda, selecting research methods, and analyzing empirical findings.
First, in setting a research agenda, an intersectional approach requires grounding research questions and analytic categories in the lived experiences of participants. Reflective of its commitment to addressing relationships of power and exclusion, intersectional work is often rooted in the experiences and recognition of communities. For example, the methods of community-participatory-based research (CBPR) can help focus the research agenda around vulnerabilities faced by affinity groups; set priorities for analytic categories; and ensure that the vocabulary used to elucidate moral positions is authentic for the communities studied. In their work with indigenous communities, Claw and colleagues demonstrate what this approach might entail. In collaboration with local partners, they articulate a framework to enhance genomic research, drawing lessons of trust-building, power rebalancing, and prioritization. While CBPR is not always intersectional in its orientation, it can promote opportunities for researchers to recognize the challenges faced by marginalized communities, acknowledge relationships of power, and develop intersectional questions. In combination with CBPR, intersectional approaches to bioethics research could seek to engage community partners or advisory boards as partners in the empowerment of disenfranchised voices, elucidating local research priorities or neglected topics in bioethics research. Meaningful engagement can also bolster the agency and autonomy of research partners in prioritizing research goals and interests, providing a mechanism for structuring dialogue when and if a research agenda does not align with the needs of a community.
Second, selecting research tools and methods to more fully capture social inequities poses a complex challenge for health disparities research—and potential opportunities for intersectional bioethics research. Intersectionality critiques illuminate how traditional research practices are prone to reductionist tendencies that homogenize patient experiences, privilege dominant narratives, and render the lived experiences of marginalized minorities invisible. Qualitative research aligns well with intersectionality in allowing space for individuals to share a variety of perspectives and contradictions to dominant narratives. A nice illustration of this can be found in the work of Triandafilidis and colleagues, who examined how women construct, experience, and negotiate smoking-related stigma in the context of intersecting identities. In engaging with social inequalities, they concluded that tobacco control measures could be more effective if they were to acknowledge these intersecting identities, which are uniquely shaped by culture, class, motherhood, and other axes of identity.
Applying intersectionality to other areas of bioethics research promises similar benefits but will be more challenging. The homogenization of broad group identities in survey research, for example, through placeholder categories such as the “dying patient” or “terminally ill research volunteers,” creates gaps in bioethics research. Because many minorities, such as women of color, are underrepresented in dominant narratives, researchers run the risk of missing the uniqueness of their experiences of health and health care. Further, as Bowleg has demonstrated, a black + lesbian + woman ≠ a black lesbian woman; such identities are neither additive nor multiplicative categorizations. Nonetheless, interventional and survey studies in bioethics often rely on these and other broad categories in making inferences, which may put this work in tension with an intersectional emphasis on institutionalized forms of power and oppression.
Intersectional approaches challenge researchers to be more vigilant in examining how analytic categories are defined and used. While open-ended questions may be impractical in some types of bioethics research, these studies might seek to capture intersectional identities better. Many analytic classifications are poor proxies for identity, and, even when combined, do not reflect a lived experience. As former National Institutes of Health (NIH) Director Francis Collins famously wrote, the widely used bins for race and ethnicity serve as “flawed surrogates for multiple environmental and genetic factors.” At a minimum, empirical bioethics research should clarify why specific definitions and social identities are applicable, going beyond master categories, such as race, sex, and income. In intersectional work, methods include decentering from gender to recognize other interlocking vectors of identity and oppression. Allowing participants to self-identify and integrating biological and social vectors within a study are potential strategies that might be employed more broadly in bioethics research.
Third, analyzing research data requires professional humility and comfort with both the complexity and the limitations of the results produced. Intersectionality makes concrete some aspects of reflexive research, exploring the interaction of participants’ lived experiences and underlying assumptions harbored by researchers who may be unfamiliar with those experiences. The intercategorical approach proposed by McCall, for example, offers a potential solution to single-axis approaches, by focusing on analyzing assumptions within an intersectional group or concept and strategizing to examine assumptions across other categories. In qualitative studies, interpretation can be active in recognizing intersectional experiences as emergent themes in the coding process. Adjusting these studies midstream, or revisiting findings related to moral commitments, may deepen insights into the priorities and values of research participants.
Empirical bioethics would benefit from a deliberate acknowledgment of intersections of power and oppression in patients’ and health care providers’ lives. An intersectional approach can help to restore erased voices, reveal hidden beliefs and moral values in disenfranchised groups, and identify novel interventions that address persistent health disparities.
We recognize that there are many limitations with this approach. Intersectional studies may yield important insights into health disparities encountered by a marginalized group, for example, but may be limited by the very specificity that makes these insights possible. Nonetheless, we encourage research funding agencies to embrace intersectionality theory and consider the value of such an approach as they set funding priorities. In addition, we encourage health policymakers who draw on the results of bioethics research to consider the need to address social inequities that result from intersecting marginalization, not just disparities that may be localized to broader categories such as race, gender, or socioeconomic status.
By conducting research that seeks to elevate the marginalized voices of individuals with complex social identities and vulnerabilities, bioethicists can better understand the diverse array of moral commitments that impact experiences of disease, disability, and health care. Drawing on intersectional frameworks to examine the assumptions embedded in our methodological choices can also help bioethicists to consider how their work may both challenge and reinforce positions of power and disadvantage in medicine and research. The field of bioethics would be well served by a sustained dialogue on the methodological benefits and challenges of adopting an intersectional approach in our empirical studies.
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