Interview by Jared N. Smith, PhD and Keisha Ray, PhD
In many key respects, the history of bioethics is a record of the abuse of Black bodies and minds. We are taught about how Black men were experimented on in the US Public Health syphilis study; we learn how J. Marion Sims’s misogynoir contributed to the development of American gynecology and how this attitude manifests in disparate birthing experiences and pain treatment. Recently, the family of Henrietta Lacks settled a lawsuit about the nonconsensual use of Lacks’s cells in research. But bioethics’ engagement with Black health must consist of more than what has often amounted to casuistry of our past and ongoing institutional transgressions. Recent scholarship in bioethics aims to change this, and Dr. Keisha S. Ray is helping to lead the charge.
Dr. Ray is the John P. McGovern MD Professor of Oslerian Medicine at the McGovern Center for Humanities & Ethics and Director of the McGovern Center’s Medical Humanities Scholarly Concentration. Her work concerns the social and political determinants of Black people’s health, pedagogical approaches to race education in medical schools, and ethical issues arising in the context of biomedical enhancement. I recently spoke with Dr. Ray about her research program that establishes and nurtures Black Bioethics.
In a recent piece in Bioethics Today, you argue that Black Bioethics is more than just the exploration of the various forces that impact the health and flourishing of Black folks individually and demographically. Specifically, you argue that Black Bioethics is a rebellion against bioethics. What is at the heart of this “rebellion” and what, within “mainstream” bioethics, is the movement rebelling against?
Black Bioethics concerns itself with harms to Black people’s health and their access to health justice. It’s about no longer being an afterthought in the work that bioethicists produce. We see too many instances where bioethicists devote a sentence or two at the end of their scholarship to how their work may (and sometimes most likely will) negatively affect Black people’s health, or hinder health justice for Black people. Additionally, bioethics has a repertoire of “core topics” that dominate our time, effort, resources, and funding. The topics that specifically concern Black people, such as the poor status of their health, medical racism, and unjust social inequities, are typically not among these topics. Black Bioethics aims to change this. Black Bioethics is about forcing inclusion in spaces where health justice for Black people is typically ignored or diminished.
In your recent Hasting’s Center Report piece, “It’s Time for a Black Bioethics,” you articulate that a key feature of Black Bioethics is its experiential nature. How does this experiential foundation distinguish it from other approaches to bioethics? Does it necessitate using specific analytic approaches or emphasize the importance of some investigations over others?
Some marginalized groups like Native Americans, Indigenous people, and Black people have all had their experiences with social inequities, racism, classism, and other forms of intentional discrimination regarded as not real scholarship. But this way of thinking doesn’t acknowledge that there are experiences that only these people can ever know. People from outside these demographics can imagine what it’s like to have your health impacted by racial and ethnic discrimination, but the people who actually experience it don’t have to imagine it—they know. Black Bioethics aims to give academic credibility to the ways Black people experience the world. It’s not saying that other ways of knowing ought to be swapped for only experiential knowledge. Rather, Black Bioethics wants experience to be legitimized in many of the same ways that other forms of knowledge are legitimized in the biomedical sciences and humanities.
You describe the way different subfields within bioethics—such as Black Bioethics and disability ethics—have had to establish themselves as adjacent to (rather than within) a field that has paid little attention to their primary concerns. As Black Bioethics finds its footing and flourishes, how do you see it interacting with “mainstream” bioethics going forward?
In the future, I see Black Bioethics as a space where we can focus on Black people’s health and the social, technological, and economic factors that influence their health. But I hope, eventually, that Black Bioethics demonstrates its importance for everyone doing bioethics work, especially in thinking about the impact of their work on Black people, a demographic that is continuously and intentionally marginalized and made powerless. Given the ways that our identities intersect, the people whose work involves subgroups in bioethics—disability ethics, Latinx bioethics, Asian bioethics, queer bioethics, and others—will and should work together to create scholarship and community engagement that make intentional efforts to focus on the needs of these communities. My hope is that we give more attention to all of these groups so that one day Black Bioethics and these other ways of doing bioethics are not separate, or considered subgroups, but are just considered doing bioethics well.
In another piece for the Hastings Center Report, “Holding Them Accountable,” you indicate that bioethicists face a responsibility to collectively hold biomedical organizations accountable for their nascent claims to promote health equity and address racism. What does holding these organizations (and the profession more broadly) accountable look like?
We can hold our public health organizations accountable for their proposed actions on racism and health by engaging in public scholarship. In particular, we need public scholarship that comments on these organizations’ actions, informs the public about their actions in a way that is easy to understand, and offers guidance for how these organizations can fulfill their commitments. This means giving more interviews to journalists and helping them frame the issues when needed; it also means writing more publicly accessible pieces for mainstream media (not just for academic journals). This will send the message that bioethicists are watching and are ready to publicly hold them accountable where everyone can see. But this also means we have to train bioethicists to do these things. Bioethicists need guidance from the media relations departments in our institutions; they must learn how to translate what we do and how it benefits people into accessible language for a general audience; finally, they must make efforts to translate our work for social media users. In general, bioethicists have to engage with the public and not just with those within our academic circles.
Congratulations on the publication of your new book, Black Health! What key features of Black health should bioethicists and clinicians focus on if they want to amplify Black Bioethics and antiracism in the clinic, in the classroom, and in their scholarship?
Bioethicists should focus less on individual choices. Stop blaming Black people for poor health that is beyond their control. And focus more on the fact that people make health choices within the options presented to them given their social, political, and economic circumstances. And given that Black people have inequitable access to the social determinants of health, we have to take this into consideration when discussing the status of Black health. Additionally, we have to call out clinicians’ biases and institutional biases within healthcare that prevent Black people from accessing proper care once they are within clinical settings. The poor status of Black people’s health is complex, but bioethicists’ knowledge of how social systems impact health can help generate meaningful change.
Jared N. Smith is a postdoctoral fellow in philosophy and clinical ethics at Baylor College of Medicine’s Center for Medical Ethics and Health Policy. His research concerns the intersection of the philosophy of agency and bioethics (especially psychiatry).
Keisha Ray, PhD is the John P. McGovern MD Professor of Oslerian Medicine and Associate Professor at McGovern Medical School at UT Health Houston.