Epigenetic citizenship and political claims-making: the ethics of molecularizing structural racism' by Jessica P Cerdeña in (2023) 18 BioSocieties 632–655 comments
Epigenetics has generated excitement over its potential to inform health disparities research by capturing the molecular signatures of social experiences. This paper highlights the concerns implied by these expectations of epigenetics research and discusses the possible ramifications of ‘molecularizing’ the forms of social suffering currently examined in epigenetics studies. Researchers working with oppressed populations—particularly racially marginalized groups—should further anticipate how their results might be interpreted to avoid fueling prejudiced claims of biological essentialism. Introducing the concept of ‘epigenetic citizenship,’ this paper considers the ways environmentally responsive methylation cues may be used in direct-to-consumer testing, healthcare, and biopolitical interactions. The conclusion addresses the future of social epigenetics research and the utility of an epigenetic citizenship framework.
The website for Chronomics a company that provides direct-to-consumer (DTC) testing for viral antigens and antibodies as well as epigenetic markers features the slogan “Making the unseen actionable.” The company implicitly promises consumers increased understanding of their biologies to spur change. Though the brief banner does not specify an aim toward individual, behavioral improvements or political claims-making, the message is one of empowerment: know your epigenetics and respond accordingly.
In 2020, bioethicist Charles Dupras published a commentary in Nature Genetics asking whether we are ready for DTC epigenetic testing. He called into question the legitimacy of epigenetic ‘evidence’ of lifetime exposures to stress or tobacco, imagining their use in forensic investigations and asylum evaluations (Dupras et al. 2020). Elsewhere, Dupras argues that emphasis on molecular insult is more likely to generate biomedical interventions to reverse epigenetic variation rather than prompting necessary policy and public health reforms (Dupras and Ravitsky 2016a). He invokes the possibility of discrimination based on epigenetic signaling and questions the moral responsibilities surrounding epigenetics, and whether parents and nation-states should be held accountable for the epigenetic programming of their children and citizens (Dupras et al. 2019, 2018; Dupras and Ravitsky 2016b).
This paper draws from insights gleaned through the design of a bioethnographic project on intergenerational trauma incorporating epigenetic measures of DNA methylation and neuroendocrine assays alongside anthropological methods of semi-structured interviews. I discuss the repercussions of seeking molecular ‘validation’ for the forms of social suffering currently examined in epigenetics research, including racism, trauma, poverty, and deprivation. I summarize science studies critiques of epigenetics research and its potential to mischaracterize the biological inscriptions of social experiences. Following Dupras, I further anticipate toxic interpretations of findings generated through social epigenetics research that might reproduce racialized claims of (epi)genetic determinism and buttress enduring support for biological essentialism. I advocate for cautious presentation of results and forethought over how these might be used by the public. Finally, building on the concepts of “biological citizenship” (Petryna 2013) and “genetic citizenship” (Heath et al. 2007), I develop the idea of ‘epigenetic citizenship,’ referring to how the molecularization of social suffering further constitutes the bodies of disenfranchised communities within the domain of biopolitical activism and intervention, and further propose scenarios by which epigenetic citizenship may manifest in the future. ...
I use the term ‘epigenetic citizenship’ to describe how individuals may increasingly consider their pliable, molecular selves in lifestyle and health decisions and to further consider how molecular data might be deployed to legitimate biopolitical claims or justify interventions.
Deborah Heath, Rayna Rapp, and Karen-Sue Taussig proposed the concept of “genetic citizenship” in response to advances in genomics and intensifying interest in the genetic explanations for human health, disease, and ways of being. Heath, Rapp, and Taussig observe that the process of “geneticization” mobilizes researchers, health activists, and public funding sources “as people learn to ‘think genetically,’ to see themselves in terms of genetic attributes and limits—or as investment possibilities” (2007). This ‘auto-geneticization’ engenders novel forms of identity and claims-making, prompting people to contemplate how their genetic selves valence understandings of illness, ability, and advocacy. The authors propose the term “genetic citizenship” to link “discussions of rights, recognitions, and responsibilities to intimate, fundamental concerns about heritable identities, differential embodiment, and an ethics of care” (Heath et al. 2007). Rooted in the discourse of genetic citizenship, ‘epigenetic citizenship’ examines the sociopolitical significance attached not to the fixed, coding sequences inherited by chance, but rather the flexible, chemical modification acquired through violence.
Epigenetic citizenship is performed at the interface between individuals and healthcare providers, insurance agencies, corporations, governments, and funding organizations; individuals may also enact epigenetic citizenship through self-regulation and behavior change. Epigenetic citizenship relies on Niewöhner’s notion of the “embedded body,” or a body permeated by its past and present social and material environments (Niewöhner 2011). Epigenetic citizenship advances this idea forward, proposing that increased recognition of the interdigitation between molecular body and environment makes way for new interactions between suffering individuals, researchers, and policymakers. As science historian Sarah S. Richardson explains, “Epigenetics does not so much ‘make plausible’ the embedded body; rather, it fixes the molecular gaze on the embedded body… and elevates it to the center of biomedical theory, intervention, and surveillance” (2015, p. 227).
As epigenetic testing is not yet widespread, iterations of epigenetic citizenship are largely imagined. Here, I discuss these articulations of epigenetic citizenship at the level of the individual—as a healthcare consumer and community member—and the state through case-based scenarios of self-regulation, identity, claims-making, and state control.
