In the mid and late nineteenth-century, birthmarks and fingerprints were, in legal and cultural realms, regarded as possible solutions to problems of individual and racial identification. The strong (Western) desire – driven by fantasy, as Ellen Samuels argues[i] – to naturalise and stabilize embodied social identities, such as gender, disability and race, grew even more intense in the twentieth- and twenty-first-century with the rise of genetic science, the Human Genome Project and the development of new biotechnologies. DNA and blood rapidly became framed as the master-keys to offer neutral knowledge about human diversity and identity. New biotechnologies as, for instance, three-parent IVF or CRISPR-Cas9 seem to grant us indispensable power not only to anticipate but also to shape future people.[ii] While it is true that genetic identity markers exist, the idea (or desire?) that a scientist can unproblematically and in an objective way read and determine someone’s hidden truths on the molecular level, unravel someone’s heredity and assign or exclude her as a member of a certain community, is more a strong cultural imaginary with social and political implications than a scientific fact.
Several monographs and special issues already exemplify the urgent need to scrutinize this cultural ‘genetic imaginary’ and articulate the role of the humanities in developing and extending biomedical thinking.[iii] The Research Symposium ‘Global Genetic Fictions’, organised by Clare Barker at the University of Leeds, 25-26 April 2019, sought to foreground critical engagement from the humanities in investigating genetics with a focus on cultural representations. Additionally, the symposium explicitly wanted to think about genetics across cultures, meaning that neither Western understandings of the (epi)genome, nor Western scientific models were taken for granted.
Throughout the two days, speakers engaged with (epi)genetic definitions of heredity, community and indigeneity and asked themselves whether cultural representations can open up hegemonic (epi)genetic models of identification and formulate some alternatives. How do literary texts as well as popular culture deal with scientific knowledge of the (epi)genome? How are cultural representations constructing and deconstructing public understandings of biomedical knowledge? What are the social and cultural implications of (epi)genetic research and genetic collections?
The first panel set the tone by exploring how blood collections and neural structures are narratively framed as bodily truths that could offer knowledge about human diversity, behaviour and experience. Jenny Bangham (University of Cambridge) discussed her encounter with the large paper-based collection of haematologist Arthur Mourant’s genetic project – a project carried out during the British decolonization and aimed at formulating new ways of understanding race and human history by collecting and classifying blood groups across populations and ethnic groups. As well as unravelling the political contexts and moral dilemmas underpinning Mourant’s project, Bangham also raised philosophical questions about meanings, functions and fictions of blood and paper archives. Natalie Riley’s (Durham University) paper focused on A.S. Byatt’s novel, Babel Tower (1996), which engages with twentieth-century genetics. By bringing biomedical literature and fiction in conversation, Riley argued that Babel Tower raises interesting questions about the problematic and reductive links between genetic neural structures and human behaviour.
In the second panel the discussion moved to popular culture. Loredana Filip (Friedrich-Alexander University of Erlangen-Nuremberg) analysed two TED talks by Juan Enriquez and Riccardo Sabatini and convincingly argued that while these TED talks disseminate and popularise complex scientific genetic knowledge, they also have a hand in shaping our genetic future. In his paper ‘Post-genomic Identities in Sound and Verse’, Jerome de Groot (University of Manchester) explained how rappers, like Kendrick Lamar with his song DNA (2017), and writers, including Ali Smith with her novel How to be both? (2014), are responding to and even queering the new post-genomic period. de Groot, who is particularly interested in aesthetic questions, explored what kinds of new tools and positions the post-genomic state might offer to the artist. A discussion followed about the tension between materiality and immateriality; on how a song, poem or literary text can be a reification of DNA, how it can represent the idea of DNA as an information entity (content) as well as a material entity (form).
Loredana Filiip: “The conference has definitely inspired me on many levels. It made me reflect upon the social and political contexts in which genetic fictions emerge, especially the role of capitalism (and their interrelatedness with discourses of power and control). And the ways in which genetic fictions grapple with questions of identity and ‘selfhood,’ – or how they mediate certain understandings of the ‘self’ – as well as the degree to which they allow or deny agency.”
Genetic privacy, a significant and pressing topic in the current political climate, was the explicit focus in the third panel. ‘Why care about genetic privacy?’ asked Jay Clayton (Vanderbilt University). Because genetic information can stigmatize individuals and communities seen as possessing heritable traits, disabilities, or diseases. It can reinforce new stereotypes and create new forms of eugenics, etcetera. Public perceptions of science – often fuelled by cultural representations – play an important role in policy-making. Therefore, it is important that literary and cultural scholars, who are trained in analysing such representations, affect decisions on science policy. Paul Hamann (University of Hamburg), who has worked with Clayton on a multidisciplinary project on representations of genetics in more than 350 films and television episodes from 1917-2018, then presented on Margaret Atwood’s MaddAddam trilogy. He showed us how the novels engage with topics of pervasive corporate surveillance and genetic data controlling and how this is tied up with the limits of agency.
The following panel focused on genetics and reproduction. Clare Hanson (University of Southampton), who has a forthcoming monograph on genetics in the British literary imagination, focused on the figure of the clone in Eva Hoffman’s The Secret. The clone in Hoffman’s novel gives an opportunity to interrupt and open up heteronormative interpretations of temporality (and thus of reproductivity) and genetic imaginary. Reading Hoffman’s novel through Catherine Malabou’s essay on epigenetics and cloning, One Life Only (2015), Hanson shows how contemporary biological concepts help to think differently about categories of identity and difference, temporality, causality and kinship. Lucy Burke (Manchester Metropolitan University), addressed how debates in reproductive ethics and public policy are still dominated by a deficit model of disability, particularly the idea that disability has a negative financial, economic and societal impact. This, coupled with the availability of non-invasive prenatal testing (NIPT), has led to Down Syndrome being framed as the disability par excellence that must be avoided as much as possible. Against this background, Burke read a Nordic crime fiction novel by SigurdardÓttir, Someone To Look Over Me (2009) with a focus on how the conventions of this genre reimagines hegemonic thinking patters about caring, human values and equity and this especially in the economic context of the global financial crisis of 2008.
Michell Chresfield: “The symposium was very useful for me in terms of expanding my approaches as a cultural historian. The ability of my fellow presenters to place their readings of such fascinating literary works alongside these discussions of genetics really opened up for me the possibilities for cultural history.”
The focus of the second day shifted more explicitly to postcolonial and race issues. Josie Gill (University of Bristol), who has recently finished a monograph BioFictions: Race, Genetics and the Contemporary Novel, spoke about the racialization of medicine. She referred to a drug (BiDil) that was especially designed and promoted to treat heart failure in the African American population. The campaign for this drug, Gill stated, depended heavily on the idea of race as a biological reality – though BiDil’s creators acknowledged that race here was used for an unknown genetic marker. Gill not only unravelled the underlying dynamics of such a campaign and naturalization of race, she also showed how this kind of practice is satirized in Colson Whitehead’s novel Apex Hides Hurt (2006). The novel explicitly addresses how the market driven personalization of medicine along racial lines relies not on biological explanations of race, but on the multiple ways race is signified in language.
Michell Chresfield (University of Birmingham) continued the (ethical) debate on race as a biological entity. More specifically, she focused on the complex dynamics behind the commercialization of an ancestry DNA test, a test that has the power to determine Native American identity, and how such test functions as a biopolitical tool. The test, furthermore, raises important questions about identity, culture and belonging (for instance, for some indigenous people’s identity rests solely with tribal entities). This panel was followed by an interesting discussion on the role of institutions in targeting certain (mostly vulnerable) groups for ancestry DNA testing. Another topic raised during the discussion was about the function and meaning of kinship and community, a topic that would be elaborated upon in the next panel.
Julia Thomas: “I was particularly taken by the discussion around the re-inscription of what race could be (…) who has the power to make racial classifications and meanings but also the questions thrown up when people self-identify as a particular race. It made me think again about the need to be aware of, and question, the categorisations upon which research is based in order to recognise circularity within the claims that are made. Also, to cultivate a healthy scepticism of claims to political neutrality within science and to think more about how identities become instrumentalised and commercialised.”
Engaging with epigenetics and its different meanings, Lara Choksey (university of Exeter) proposed the inspiring notion of ‘translocality’ as both a research methodology and cultural proposition. It offers, she argued, a way of framing uncertain and multiple conditions that epigenetic research encounters and also enables us to move beyond totalising accounts of genetic heredity in popular discourse. Frances Hemsley (University of Bristol), also looked for ways to go beyond narrow genetic determinants of heredity using The Cardinals (1993), a novel by the South African writer Bessie Head, as an example. In the novel, heredity is represented as explicitly non-genetic. This panel incited a fascinating debate on how epigenetics influence and change how we think about experience. The debate also provoked varied questions about epigenetics and metaphor: to what extent, for instance, can epigenetics function as a metaphor for historical reparation, and how does this relate to trauma and memory studies?
Natalie Riley: “I have come away from Genetic Fictions with a more nuanced view of the intersections of race, ethnicity, and disability in the era of pharmacogenomics, big data, and transhumanism.”
The final panel of this research symposium was dedicated to ‘Indigenous genetic fictions’. Clare Barker (University of Leeds) focused on how scientific research can sometimes be shaped by literature and popular media. She illustrated this with the case of the ‘warrior-gene’ – a gene that is connected with aggression and would likely to be more present in Māori men. However, as Barker argued, this framing of the Māoris, both in scientific research and in the media, has been partly formed by fiction, particularly by Alan Duff’s Once Were Warriors trilogy of novels and their film adaptations. Barker thus illustrates how a literary text can hurt in the same way science can and emphasized again how entangled science and literature can be.
The final speaker of this symposium was Shital Pravinchandra (Queen Mary University of London), who presented a paper on how literary fiction attempts to respond to reductive genetic definitions of indigeneity, community and heredity. Pravinchandra discussed the trope of indigenous immunity, in which indigenous identity is repeatedly figured as genetic exceptionality and/or immunity (in examples ranging from cancer, to zombies). For Pravinchandra, indigenous fiction negotiates genetic definitions of identity by carefully distinguishing their position from genetic reductionism: indigenous communities are formed on the basis of ties that are blood-infused, but at the same time more-than-biological. This final presentation picked up on earlier discussions about categorization, linearity, causality, belonging, self-identification and kinship.
What was most inspiring about this research symposium was noticing how different research fields, readings and oeuvres can constantly interrupt each other productively; how reading texts from different fields can happen in a dialogical and continuous manner (and not so much in a conflict-based way) that take us through and beyond binary and dogmatic thinking patterns on human difference. After these two days at Leeds, I have a backpack full of new ideas, interesting references and good cheer to start my own new research project, NeuroEpigenEthics, which investigates entanglements of human biology, responsibility and experience.
Dr. Leni Van Goidsenhoven is a postdoctoral researcher at the University of Antwerp (Philosophy) and KU Leuven (Literary and Cultural Studies) where she works on the interdisciplinary project NeuroEpigenEthics (funded by an ERC Starting Grant). Her book Autism in Plural: the potential of life writing for alternative forms of subjectivity is forthcoming with Garant (in Dutch).
 The symposium was funded by a Wellcome Trust Seed Award, and part of the University of Leeds research project on ‘Genetics and Biocolonialism in Contemporary Literature and Film’
[i] Samuels, Ellen. (2014). Fantasies of Identification: Disability, Gender, Race. New York/London: New York University Press.
[ii] Estreich, George. (2019). Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves. London: MIT Press.
[iii] Bloomfield, Mandy., Hanson, Clare. (2015). “Beyond the Gene: Epigenetic Science in Twentieth-First Century Culture”. Textual Practice, 29(3), 405-413. Stacy, Jackie. (2010). The Cinematic Life of the Gene. Durham: Duke University Press.