https://orcid.org/0000-0001-8552-1822
Abstract
I take up the call for a more nuanced engagement with race in bioethics by using Creary’s analytic of bounded justice and argue that it helps illuminate processes of racialization, or racial formation, specifically Blackness, as a dialectical processes of both invisibility and hyper-visibility. This dialectical view of race provides a lens through which the ethical, legal, and social implications (ELSI) of genetics and genomics field can reflect on fraught issues such as inclusion in genomic and biomedical research. Countering or interrupting racialization in precision medicine can involve asking how marginalized groups are made invisible or hyper-visible in various aspects of the research process. Incorporating these kinds of questions into biomedical research inclusion efforts could lead to potentially powerful engagements with marginalized groups and could provide the opportunity for stakeholders to engage with the ways that racialization can happen in real-time and might undermine good intentions.
In the wake of the racial reckoning catalyzed by the brutal killings of Black individuals including Breonna Taylor and George Floyd by law enforcement in the United States, the American Journal of Bioethics published a special issue in 2021 with a focus on race and racism. In one of these articles in this issue, Mithani et al. argue that “[g]oing forward, bioethics needs to engage with the nuances of race with the same vigor that it has approached discussions of moral theories and biotechnologies. (Mithani, Cooper, and Boyd Citation2021, 13).” I take up their call for a more nuanced engagement with race in bioethics by using Creary’s analytic of bounded justice (Creary Citation2021). My claim is that bounded justice helps illuminate processes of racialization, or racial formation, specifically Blackness, as a dialectical processes of both invisibility and hyper-visibility. This dialectical view of race provides a lens through which the ethical, legal, and social implications (ELSI) of genetics and genomics field can reflect on fraught issues such as inclusion in genomic and biomedical research. This dialectical lens can be complementary to justice analyses that are predominant in ELSI when discussing race and racism. In other words, bounded justice provides a pathway for developing and using more robust and nuanced race theory in ELSI and bioethics overall.
ELSI AND RACE
Part of my claim is that a dialectical view of race is a departure from the main ways that race is discussed in ELSI scholarship. The dominant way that ELSI literature has dealt with the ontology of race—or what kind of thing race is—can be illuminated by comments made by famed geneticist James Watson. Around New Year’s Day of 2019, the New York Times published a story describing that Watson has been stating publicly since at least 2007 that genetics research shows that Black people are less intelligent than white people. He received criticism for those comments but doubled down on them again in a Public Broadcasting Service (PBS) documentary that focuses on his life and career that would be broadcast later that year. The article states that these comments “have been invoked to support white supremacist views (Harmon Citation2019, 1).” Though these revelations about Watson might be new for some, they raise a familiar tension and debate that has been raging in genetics and genomics for decades.
ELSI scholars have explored this debate and the tensions between racial realists, or those who believe that race is a biological or genetic category, and social constructionists, who believe that race is a social category, as well as those genetic scientists whose views blur these lines. For example, Sankar has noted that “some genetics researchers report contradictory beliefs and practices about the use of race and ethnicity in that they endorse the concept of socially constructed race at the same time that they continue to use it as a genetic variable (Sankar et al. Citation2015).” Fullwiley writes about the ways that genetic scientists think of race as “biologistical” and is imbued with particularly American conceptions of mixing of parent populations, while El Haj notes that contemporary ideas of race in genomics are characterized by notions of fluidity and mixture (Fullwiley Citation2008; El-Haj Citation2007).
ELSI scholars have also argued that these different ontologies of race in genetics and genomics are not merely different views, but have ethical implications, and can have harmful consequences. For example, Lee, Mountain, and Koenig (Citation2001), argue that the genetic view of race is dangerous because it amounts to a reduction of the social that shifts the locus of responsibility for addressing health risk from social processes and institutions to individuals themselves as bearers of “risky genes” (Mozersky Citation2012). Wailoo and Pemberton also write about the dangers of genetic racial realism, and state that the danger lies in not just the reduction of social influences on health, but also that localization of genetic risk to individual bodies can be used to justify social exclusions (Wailoo and Pemberton Citation2006). Still others note that genetic racial realism is dangerous because it is an “embrace, consciously or unconsciously, [of] a social-political philosophy of white supremacy,” (Smith Citation2021, 9), and “represents a form of racial prejudice that hinders ethical knowledge production Tsai (Citation2021, 45).” Thus, ELSI scholars have noted that genetic racial realism is concordant with neoliberalism’s tendency to shift responsibility for care from state institutions to individuals, as well as with the white supremacist worldview and value system.
The other way that race is discussed in ELSI scholarship is via racism, specifically positioning racism as an invalidation of justice. This has taken the form of arguing for increased inclusion of those subject to racism in genomics research so that they can receive its future benefits (Bonham, Callier, and Royal Citation2016; Bentley, Callier, and Rotimi Citation2017; Sabatello et al. Citation2018). Some have noted that inclusion is not a panacea response to racial injustices, since processes of “democratizing genomics” will not achieve its intended effects if upstream engagements are superficial, and if these democratizing efforts end up reifying or creating social categories (Reardon Citation2005; Bentley, Callier, and Rotimi Citation2017).
Inclusion and Bounded Justice
Creary’s work on bounded justice also highlights the link between justice, specifically racial justice, and inclusion in biomedical research, just as ELSI scholarship does. Bounded justice also helps to highlight the problematic aspects of inclusion, but in a different way than is described in the ELSI literature. Bounded justice critically interrogates efforts aiming to achieve health justice and address racial injustices. Though based on her work examining inclusion of individuals with sickle cell disease in health policy activities in Brazil, this analytic can be used to critically assess attempts at health justice whenever there are attempts to include groups who have been subject to historical and current marginalization and societal oppression. Core to bounded justice is a critical examination of inclusion efforts, specifically the metaphorical and literal practice of inclusion as offering a “seat at the justice table” to oppressed groups (Creary Citation2021, 244). However, Creary argues that these efforts are often “performative” and “empty” attempts at inclusion because they “fail to recognize the fundamental, even existential, exclusion” (Creary Citation2021, 242) that some oppressed groups face. She complicates the notion of the “seat at the table,” and asks us to imagine it as one,
with unstable and rotting chairs and no regard to how community participants may have arrived to the table, whether or not there is shared language to communicate across the table, and no accommodations for those whom may find the chair more harmful than helpful [and] do not often take into consideration that the table is unwelcoming, and is not equipped to deal with, understand, or hear the individual’s total lived experiences that brought them to the table to begin with. The enthusiasm for representation disregards how social inequality in its broader contexts are brought to the table (Creary Citation2021, 245–247).
Creary argues that even well-intentioned efforts to address health inequities can still be “bounded” if there is not an understanding of the depth of these exclusions.
Though there is much more to interrogate in this fulsome analytic, I will focus on how the concept of bounded justice points to erasures of historical and current structural forces like racism, especially during attempts at inclusion that intend to achieve health justice. For Creary, well-intentioned “attempts at health justice and reparation” (Creary Citation2021, 243) become bounded justice when there is a lack of acknowledgement that these same attempts themselves are “bounded by larger societal, systemic, and structural factors (Creary Citation2021, 243).” Thus “bounded” here means limited or constrained justice. But it is important also to note that the limits also create additional constraints that then limit the full realization of justice-oriented actions. The “structural forces” are the bounds that subsequently have bounding effects including “‘deep distrust of institutions, unstable political leadership, and the intractable barriers erected by generations of poverty, segregation, and disinvestment’” (Creary Citation2021, 249).
Creary’s assertion that well-intentioned health justice efforts falter because they do not consider historical and current bounds pushes us to ask why and how these erasures happened and continue to happen. Why is it that health and biomedical researchers, health equity scholars, policy makers, and government actors fail to recognize these erasures? In other words, bounded justice pushes us to consider how racism can be so prominent, on the one hand, as the catalyst for, say, being more deliberate in engaging with and including oppressed and racialized groups, yet these same histories and current processes of racism and marginalization at work in these efforts themselves can go unrecognized?
This is where an understanding of racialization as processes of both invisibility and hyper-visibility can be useful. Through bounded justice’s assertion that erasures of marginalization can neuter efforts at health justice, particularly efforts to include those who are subject to racism, it becomes clear that erasure is a key and central aspect of racialization. Or, in other words, we can think about people becoming “raced” through the systematic erasure of their histories and current experiences. This is one important way that race operates and that race becomes instantiated in society and in bodies—through various processes of invisibilization, even as these same people can be made hyper-visible through inclusion efforts and offers for seats at the table. Bounded justice, through its orientation to erasures of oppressive histories and structural inequities, brings to the fore the dialectical processes of racialization that create both hyper-visibility and invisibility for racialized people.
Racialization as Invisibility and Hypervisibility
Though I do not have space here to offer a comprehensive review of racialization as both invisibilization and hyper-visibilization, I will share a few illustrative examples. Social scientists have highlighted how processes of social invisibilization go hand in hand with hyper-visibilization as processes of racialization, and key to the experiences of racialized persons. In The Souls of Black Folk, W.E.B. Du Bois writes about the “veil” as a unique aspect of being Black in America. The veil, in one sense, is dark skin, which makes Black people hyper-visible as not white in American society. In another sense, the veil refers to the way that Black experiences and Black people’s humanity are invisible to white Americans and American society at large (Du Bois and Holloway Citation2015). Another example of racialization as involving hyper-visibility and invisibility comes from the early social sciences literature in the American Sociological Review in 1954. Sociologist William Kephart, in his examination of attitudes of white and Black police officers notes that there was increased numerical visibility of Black people in policing. He wrote that “visibility is defined as the extent to which Negroes are numerically overestimated… most of the white policemen tend to believe the percentage of Negro arrests in their own districts is higher than it actually is; as a matter of fact, they over-estimate to a considerable degree (Kephart Citation1954, 463).”
We can also look to Frantz Fanon (Fanon Citation2008), who famously discussed both invisibility and hypervisibility as key aspects of racialization in his book Black Skin White Masks. He examined how colonized persons are made invisible in French society, but also called out and made hyper-visible in daily interactions through comments on their speech and appearance. In analyzing the scene of Fanon being called out as a “Negro” on the street by a white French child, scholar Newell describes this as “politics of visibility”, where, “[i]n an instant Fanon is positioned within an archive of colonialist images…each racially (re)marked body is abducted from its own distinctive time and place…While the whiteness of the mother and child lingers behind them like a shadow, failing to mark them (Newell Citation2009, 243).” Racialization, specifically Blackness, happens through this marking and this hyper-visibility.
More contemporary social science analyses of hyper- and invisibility include analyses of media, such as work by Patricia Hill Collins, who writes about controlling images that render Black women both invisible and hyper-visible, as well as information studies scholar Safiya Noble’s examination of Black women’s hyper-visibility in online searches of pornography, but their invisibility in searches of “beauty” or “professor” (Collins Citation1998, Noble Citation2018). Scholars have also discussed these dialectical racializing processes happening in biomedicine. Khiara Bridges discusses the ways that low-income Black and Brown women are rendered both invisible and highly visible as they seek reproductive care in public hospitals (Bridges Citation2011). Ruha Benjamin’s examination of stem cell research includes the observation from a Black interlocutor that part of being Black in biomedicine means that Black bodies are highly desirable and visible as subjects for research for diversity purposes but ignored and invisible as patients worthy of medical care (Benjamin Citation2013).
Moreover, we do not have to just look at academic scholarship to invisibility and hyper-visibility at work as a mode of racialization: in the news media in the US, we see the hyper-visibility of Black criminals and the invisibility of Black victims, especially missing Black women and children (Slakoff and Fradella Citation2019). And over the past few years we have seen the macabre spectacle of the hyper-visibility of recorded images and videos of Black deaths at the hands of law enforcement (Ibrahim Citation2022). The aforementioned racial reckoning in the US has led to the ascendance of diversity, equity and inclusion or DEI efforts in marketing and professional spaces. But even within DEI we see evidence of the hallmarks of hyper and invisibility processes. For example, scholar Pierre Orelus has noted that “professors of color are frequently rendered invisible at predominantly white institutions, although some are made visible only to be conveniently used by these institutions for diversity propaganda purposes (Orelus Citation2013, 1).” These examples show that to be racialized, and specifically to be racialized as Black, means being subject to both processes of hyper-visibility and invisibility, spotlighting and erasure.
Bounded justice opens a conceptual pathway for connecting processes of racialization as invisibilization and hyper-visibilization that can be at play even within the realm of “forward-thinking and justice-based notions of inclusions (Creary Citation2021, 242).” This link between inclusion, bounded justice, and invisibility and hyper-visibility is important for ELSI because the field has already noted the challenges and shortcomings of inclusion efforts in genomics research. The field has thus far relied on notions of justice to help frame inclusion interventions, but race theory, specifically the dialectical theory of race that I have laid out here, can also be useful for charting and designing responsible, respectful, and ultimately less bounded inclusion interventions.
Invisibility and Hyper-visibility and in Precision Medicine Research
I will offer one example of the utility of thinking with this dialectical theory of race that is drawn from precision medicine research. Precision medicine aims to collect multiple forms of data, from genomics to electronic health records to activity tracker data to tailor medical care to individuals—or give them the right care at the right time (Ferryman and Pitcan Citation2018). Precision medicine research, like other kinds of biomedical research, has been focused on increasing the inclusion of minoritized and marginalized groups as research participants, and as partners through various engagement efforts. Project Baseline, a precision medicine research study funded by Verily, which is owned by Google’s parent company, is one such example of a precision medicine research project focused on inclusion and engagement.
In a Project Baseline blog post entitled, “Establishing a New Baseline of Health and Research Participation for Diverse Populations (Patrick-Lake Citation2017),” the author conveys the idea that the participation of diverse groups of people is important because different kinds of bodies are informative for research and because these different kinds are needed to establish “normal” reference points and measures for health.
There is mention of “the historic inequalities in research,” and the project’s “approach that engagement is a bidirectional relationship resulting in mutual benefit” (Patrick-Lake Citation2017). The post also outlines that diverse “groups have an active role in helping to educate the Project Baseline study team about the needs of minority participants and underrepresented communities” (Patrick-Lake Citation2017). Members of these groups also participate in a steering committee, and it is mentioned that researchers “made a concerted effort to ensure that their study staff is representative of the Bay Area” (Patrick-Lake Citation2017). The blog post also mentions holding “listening sessions,” and engaging with clinical staff who serve minority groups. The post ends with the hope that the project will “continue learning about the most effective tools for minority inclusion” (Patrick-Lake Citation2017).
This is a short blog post and obviously does not fully represent Baseline’s inclusion and engagement activities. However, it is important to analyze this public document, as it does represent intentional communication with the public and a display of the project’s values and commitments. For Project Baseline, the inclusion of minoritized groups can be viewed as an attempt to flatten social hierarchies by placing them in the role of “educators” and scientific researchers in the role of listeners who are committed to continued “learning.” In other words, one way that Baseline is attempting to intervene on “historic inequalities in research” is to give minoritized groups not only a seat at the table, but the opportunity to be educators.
But Creary’s bounded justice analytic encourages us to be critical of seats at the table that do not put exclusions at the forefront. In that vein, we can question how Verily’s efforts to include community members as partners, even leaders, may be limited. Creary argues that there must be “shared language to communicate across the table” (Creary Citation2021, 245) but this example leads us to question whether community members who were invited to “educate” the researchers must also do the work to establish the shared language. And although the blog post refers to historic inequities, there is no mention of how both historic and current marginalizations might affect how participants from the community are able to engage in these inclusion efforts. In addition, it is important to note that despite this empowering rhetoric, Verily still creates and controls the fora to be “educated” and to “listen” to these communities.
In this example, we can critique this as an instance of “public performativity” of inclusion (Creary Citation2021, 251), and potentially diagnose this as an instance of bounded justice, since the concept “describes the inherent limitations of even forward-thinking and justice-based notions of inclusions (Creary Citation2021, 242).” And we can also deploy the dialectical view of racialization as invisibility and hyper-visibility to add another layer of analysis to this example. It is possible to view the listening session as attempting to respond to the past invisibility of racialized minorities, by inviting them to have a seat at the table. But in constructing the engagement this way, with these groups positioned as the teachers, they are not just seated at the table, we can interpret them as hyper-visible because they are seated at the head of the table. Also, they are invited because these groups are valuable for the categories of difference that they represent, and thus are a resource for scientific researchers, as their inclusion will make them highly visible as desired categories of diverse populations in precision medicine datasets.
Although Project Baseline might have been aiming for inclusion and diversity, assessing their efforts through the lens of racialization as dialectical invisibility and hyper-visibility might invite pause and consideration. For example, the invitation to be educators and leaders of listening sessions spotlights this group, but if these efforts are also coupled with the invisibilization of current experiences of racism and other forms of marginalization, then well-intentioned inclusion efforts reproduce patterns of racialization. Countering or interrupting this process of racialization in inclusion efforts in precision medicine research may be as simple as reflecting on this balance of visibility and invisibility by asking questions like—are we making marginalized groups highly visible? How? Does this hyper-visibility put any undue burdens on these groups? Are Black people highly visible in some parts of the project website such as “community” sections, but invisible in sections that deal with scientific expertise? For invisibility, there can be discussion prompted by questions like: what might be made invisible as a result of these inclusion efforts? Are current, not only historical experiences of racism and discrimination addressed? Are there local and/or community-level capacities and assets that might be overlooked or underemphasized as part of inclusion efforts? Overall, there could be a transparent and upfront discussion with and among stakeholders that inclusion efforts might struggle with this dialectic of hyper-visibility and invisibility.
These are just some of the questions that can emerge from a consideration of how racialization, specifically Blackness, is an interplay between invisibility and hyper-visibility. Incorporating these questions into biomedical research inclusion efforts could lead to more nuanced and potentially powerful engagements with marginalized groups and could provide the opportunity for stakeholders to engage with the ways that racialization can happen in real-time and might undermine good intentions. In this way, there is a potential for race to be understood in biomedical research as more than either an essential biological category or a social construction, but a result of a live and ongoing social process.
CONCLUSION
In this article, I have endeavored to show that race and race theory matters in ELSI, and we can get to it through bounded justice. Bounded justice helps forge a path where race theory in ELSI and in bioethics can be given the “the same vigor” as “moral theories,” as Mithani et al. urge us to do. This paper proposes that ELSI scholars can think more deliberately about racial theory via the framework of bounded justice. Bounded justice is significant and useful for ELSI scholars because it provides another framework for thinking about justice, and because it provides a conduit for ELSI scholars to engage with race theory. The bounded justice route can get to an ontology of race beyond racial realism or social constructionism. ELSI scholars can think with a theory of race that focuses on the racial formation of Blackness as a dialectic of hyper-visibility and invisibility. This is a way to add nuance to the ELSI scholars’ theoretical toolkit for engaging with race and racism. It also provides the nuance of not just thinking about race, but how Blackness specifically is enacted in vis-à-vis white supremacy.
Inclusion in genomics and precision medicine research is a key matter of concern for many ELSI scholars, and this dialectical operation of racialization can help illuminate some of the ways that interventions can be “bounded” as Creary argues. In addition, this attention to racialization and the dialectics of Blackness can dovetail with bioethics’ recent calls for more attention to anti-Black racism, to the formation of “Black bioethics,” and a “proactive bioethics,” (Ray Citation2021; Mithani et al Citation2021; Nelson Citation2020). These formulations center justice, specifically racial justice, and to this we should add a focus on processes of racial formation, specifically those that render certain kinds of bodies both hyper-visible and invisible. In other words, in addition to looking at how we may or may not be advancing justice through engagement or access to genomic research, we can examine how these efforts might be initiating processes of invisibility and/or hyper-visibility of those subject to racism. Understanding and mapping processes of social differentiation in its nuanced and sometimes paradoxical ways should be an important tool in the ELSI and bioethicists’ toolkit.
DISCLOSURE STATEMENT
Kadija Ferryman is a member of the Institutional Review Board for the National Institutes of Health's All of Us Research Program. She also serves on the Digital Ethics Advisory Panel for Merck KGaA.
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