University of California Press, 2018. 518 pages
“The science will let loose its cascading interactions with utter impassivity; yet how we inhabit that knowledge will be a contest of the imagination, a sedimentation of political futures, a constructed infinity of worlds.” —Patricia J. Williams
What are the consequences of a bioethics that fails to keep up? With the rapid development of new biotechnologies like CRISPR, Beyond Bioethics makes a timely call for a novel take on bioethics capable of addressing the significant sociopolitical implications of these technologies. The contributors to this volume make clear that triumphalist cultural narratives of scientific innovation and progress have obfuscated and even impeded necessary ethical conversations about the development and application of biotechnologies too often touted as the future of biomedicine. Each of the 54 essays in this collection demonstrates how current bioethical frameworks and vocabularies fail to effectively grapple with the complex, intersectional problems that come with assisted reproduction or human genetic modification. Bridging together thinkers across the humanities and sciences divide, Beyond Bioethics models a progressive, interdisciplinary approach to bioethics that extends beyond a focus on the individual toward a “new biopolitics” of the global, the collective.
Principlism has long been at the core of bioethics as a field and practice. John H. Evans traces in “A Sociological Account of the Growth of Principlism” how principlism, with its “lure of calculability and predictability,” came to define bioethics in explicitly individualist terms. The reduction of bioethical problems to the level of individual persons and the transactional relationship between them—between a medical practitioner and patient or researcher and subject—has in turn led to an overemphasis on individual autonomy, personal sovereignty, and informed consent. While such issues like patient justice, end-of-life care, and organ transplantation remain important to bioethicists attempting to guide medical decision-making, the efficacy of their interventions still greatly depends on the coherency of terms like “consent,” which are insufficient or even inapplicable in many non-Western societies. Furthermore, the focus on the individual risks ignoring the social reality of groups. To illustrate the consequences of this, Troy Duster cites a provocative case of a study published in Denmark that concluded that males with Huntington’s disease are more likely to commit crimes in comparison to those who do not have the disease (xv). In applying for permission to conduct this research, the authors insisted that “no individuals” would be harmed by participating in the study based on their strict practice of removing any identifying personal information. However, this entirely misses how this report implicates all men diagnosed with Huntington’s as a group who might now face greater stigma and discrimination. The “new biopolitics” theorized throughout this collection is thus meant to “supplement, complement, and sometimes even displace” this narrow principlist bioethics that has little to say beyond personalized medicine (xxii).
In their introduction, Osagie Obasogie and Marcy Darnovsky define this “new biopolitics” in terms of 5 primary concerns: 1) “reckoning with the role of commerce and markets in biomedicine and biotechnology,” 2) “understanding the human genome as part of the common heritage of humanity,” 3) “avoiding technical developments and genetic narratives that embed social and political preferences at the molecular level,” 4) “ensuring democratic oversight of powerful human biotechnologies,” and 5) “steering clear of a new market-driven eugenics” (9-10). What sets this volume apart from previous collections is this focus on direct-to-consumer biotechnologies and the dangerous consequences of medicine’s deepening enmeshment within the neoliberal marketplace. Part V of the book focuses explicitly on patients as consumers within this marketplace that increasingly commoditizes health as something controllable through individual consumer choices. Home testing kits by companies like 23andMe sell their products by appealing to customers seeking to have agency over their own health, but as Jessica Cussins makes clear, these tests frequently generate an “unnecessary anxiety or a false sense of security” because of how deterministic they make genetics out to be (252). Precision genetic medicine claims to tailor medical care to individual genetic characteristics, but who develops, controls, and profits from the infrastructure and flows of bioinformation in the age of genetic databases and biobanks remains a serious ethical concern. Similarly, CRISPR’s potential to enable parents to create “designer babies” with customized genetic profiles raises precisely the kind of ethical problems that arise out of the overvaluation of the individual “right to choose.” As many of the essays reveal, this “choice” is never innocent; rather, it is almost always informed by normative assumptions about ability, class, gender, race, and sexuality. What bioethics has been slow to do is address how social, economic, and political forces work upon the seemingly unmediated choices of individuals.
On the other hand, the very kinds of bodies we stigmatize as pathological or undesirable equally expose the ways in which science naturalizes social or cultural views. This is particularly evident in genetics. Genetic testing for disabilities like Down Syndrome, while framed as enabling parents to make an informed decision about the future of their child, has enabled what many scholars have described as a “new eugenics” that would see disability and disabled life entirely eliminated. While bioethics emerged out of the aftermath of the Nazi regime, the field has been slow to confront the enduring legacy of eugenics. To this end, the biopolitical take on these biotechnologies attends not only to which bodies are ensured life but also what and how social groups and populations marked for death. Beyond Bioethics mobilizes critiques from feminist, disability, and critical race studies to confront this new eugenic imaginary that increasingly pathologizes marginalized groups under the guise of improving health outcomes. For Obasogie and Darnovsky, such a shift in bioethics toward biopolitics reorients the field toward social justice and human rights-based concerns at a moment when we need it most. It gives us the tools to imagine how we might, to use Rosemarie Garland-Thomson’s phrase, “conserve” these undesirable bodies as ethical resources worthy of life and part of what Tom Athansiou and Marcy Darnovsky argue as our genetic commons.
The editors describe their “new biopolitics” as a “project in formation” that “doesn’t provide definitive answers” to all of the ethical questions raised. I want to speculate more about the theoretical payoffs of pivoting toward biopolitics as a means by which we might reimagine what bioethics can do (8, 11). To borrow their phrase, how might biopolitics give bioethics “more teeth” where it is needed most? I was immediately reminded of two recent essay collections that share the same title:Beyond Biopolitics. Both speculate on how our current cultural moment is “beyond” or “after” biopolitics as Foucault first theorized it and perhaps a reinvention of biopower as it works on populations at the scales that Obasogie and Darnovsky are interested in thinking about. Both of the volumes engage with the intimate relationship between biopolitics and necropolitics, or what political thinkers like Étienne Balibar have called positive and negative biopolitics. The greater social justice project of Beyond Bioethics would greatly benefit from greater engagement with these ongoing debates in studies of post-Foucault biopolitics on the topics of sovereignty and governance. How do states, by framing these new biotechnologies as the management of risk down to the molecular level, enable vast forms of exclusion and violence for the preservation of the life capacities of certain populations? Could bioethical principles of patient justice be in turn applied to the unique forms of biopolitical governance of life and death? Ethical considerations of these strategies of population control and surveillance vis-à-vis biotechnology need to accompany critiques of global consumer capitalism.
More recently, scholars of biosecurity and biodefense have focused on the temporal implications of being “beyond biopolitics.” Brian Massumi has argued for how contemporary discourses of national security work to produce and proliferate, not merely represent, temporalities of risk, insecurity, and emergency. As a different modality of biopower, preemption operates by mobilizing various forms of surveillance and biotechnologies to justify certain acts of state intervention and violence. How can we take a bioethical approach to temporality within such conditions of persistent crisis and shifting economies of risk? Given the culture of speed surrounding the research and development of biotechnologies, an ethics of such speediness seems particularly urgent.
Travis Chi Wing Lau recently completed his Ph.D. at the University of Pennsylvania Department of English and is currently a postdoctoral teaching fellow at the University of Texas at Austin. He is currently working on a book project on the British history of vaccination and the rise of national health and health security. His research interests include eighteenth- and nineteenth-century British literature, the history of medicine, and disability studies. His academic writing has been published in Disability Studies Quarterly, Digital Defoe, English Language Notes, and Romantic Circles. His creative writing has appeared in Wordgathering, Assaracus, The New Engagement, The Deaf Poets Society, Up the Staircase Quarterly and QDA: A Queer Disability Anthology.
Beyond Biopolitics: Essays on the Governance of Life and Death.eds. Patricia Ticineto Clough and Craig Willse. Durham: Duke UP, 2011; Beyond Biopolitics: Theory, Violence, and Horror in World Politics. eds. François Debrix and Alexander D. Barder. New York: Routledge, 2012.