Post-Genomic Constitutions: Law, Science and the Politics of Inclusion
Sponsored by APLA and the Society for Medical Anthropology
Friday, November 18, 4:00 PM – 5:45 PM
Minneapolis Convention Center, Room: 200E
We live in a world where human health is increasingly rendered knowable through technologies of molecularization. These technologies allow for data to be mobilized, disseminated, and contested in hitherto unknown ways, raising important questions about the intersection of law and science in contemporary forms of statecraft. This panel will examine how the tactical incorporation and marginalization of human and non-human actors undergirds the constitution of state-society relations in a post-genomic age. They ask: What modes of knowledge and what types of entities vie to be included or excluded from medical, legal or bureaucratic modes of evidence that chart the effects of genomic life? How are the environment, the human and the law made meaningful in order to de/stabilize the gene as a powerful actor in contemporary political and material landscapes? How do entities as diverse as environmental pollutants, medicines, chemicals or bacteria become the focal point for action in public health, genomic science and legal bioethics.
Sonja Van Wichelen’s paper explores how new research in biology can create new ‘biolegalities’ of globalized reproduction, and reviews feminist perspectives on commercial, globalized, and gestational surrogacy. Graeme Laurie and Samuel Taylor-Alexander’s paper examines research and treatment for rare respiratory diseases, revealing how genetic reductionism intersects with patient responsibilization to render negligible and illegible the role of the environment in disease expression. Kriti Kapila’s paper examines notions of speculative well-being and imagined futures that are marshaled to accelerate the wider adoption of genomic medicine in India. Nayantara Sheoran’s paper investigates stem cell technologies in India, exploring the way ‘bioethics’ gets discursively mobilized and then articulated in practice, policy, and principle. Catherine Trundle’s paper examines nuclear test veterans’ attempts to gain compensation in the U.K., unpacking how claimants and defendants argued over the constitution of legitimate knowledge, the role of medical experts, and the agency of radionuclides.
Co-Organizers and Co-Chairs: Samuel Taylor-Alexander, University of Edinburgh; Catherine Trundle, Victoria University, New Zealand
Discussant(s): J.C. Salyer, Barnard College
The Postcolonial in Postgenomics: Biolegalities of Globalized Reproduction
Sonja Van Wichelen, University of Sydney, Australia
Much has been said about the globalization of reproduction and the manner in which reproductive labor, biological material, gametes, and babies are increasingly commodified within the global reproductive economy. In interaction with national policies and law such economies structure the ways in which reproduction is legitimated, governed, and regulated. This paper explores how new research in biology – also known as ‘postgenomic research’ or ‘the new biologies’ – can challenge some of those legalities but also create new ‘biolegalities’ of globalized reproduction. Starting from the highly disputed “baby gammy”case I review feminist perspectives on commercial, globalized, and gestational surrogacy. It is suggested that attention to these new biologies through what is called ‘new materialism’ in feminist theory will bring non-reductive and non-deterministic understandings of the mother-fetus relationship and therefore revalue the surrogate. I demonstrate through research on international adoption that such optimism might be premature and argue that the strong pull to regulate the globalization of surrogacy is inextricably linked to an increasingly biomedicalized legitimacy that privileges a right to reproduce. I conclude by proposing that postcolonial perspectives on such biolegitimacies can provide a more relational account of how biology matters in the legal governance of a globalizing reproductive economy.
Bio-Statistics and Speculative Well-Being in Genomic Medicine
Kriti Kapila, King’s College London, United Kingdom
In this paper, I compare two different research projects underway at the National Institute of Biogenomic Medicine, India to understand the different scales of speculative hope in genomic medicine. While the first project takes the diversity of a local population to statistically interpret the complex interaction between genomic and epigenomic factors in the overall incidence of disease in a mixed (local) population, the second centres configures a national genomic population through and around a single condition (oral cancer) as part of the International Cancer Genome Consortium. Each project is based in a different place of and relationship between the natural, human, and social sciences and reverses the other’s figure-ground complex in the configuration of scale and the boundary of the population. While the two projects may share a common understanding of genetic variation as a marker of both ‘stability’ and ‘instability’ of populations they are nevertheless underpinned by different conceptions of the relationship between population, predictive medicine, and health. Through these research projects, the paper examines notions of speculative well-being and imagined futures that are marshaled to accelerate the wider adoption of genomic medicine in India and beyond.
Post-Genomic Lock-in: Biomedicine, Life Sciences, and the Law in Action
Graeme Laurie, University of Edinburgh, United Kingdom
Samuel Taylor-Alexander, University of Edinburgh, United Kingdom
This paper examines how biomedical and legal logics work together to “lock in” certain approaches to knowing and treating disease. Drawing on ethnography of research and treatment for rare respiratory diseases, we show how genetic reductionism intersects with patient responsibilization to render negligible and illegible the role of the environment in disease expression. Many medical staff view the core determinants of disease expression to be patients’ adherence to treatment regimes and the type of genetic mutation causing disease. This view is reproduced through research in the field, which charts relations between how the disease manifests in the body (phenotype) and the genetic mutations known to cause rare respiratory diseases (genotype). Researchers gather information on such things as lung capacity (FEV1), diagnostics (delays) and ethnicity to the exclusion of, for example, data on socio-economic status of patients’ and their occupational or home environments. Examining how the type of information produced about disease intersects with legal and bureaucratic requirements for storing data, we show that possible research trajectories are delimited as concerns with privacy and anonymity buttress the biomedical extraction of data from patients’ bodies. In doing so, we reflect on (1) the role of law and bureaucratic norms play in the “thinning of the world” that accompanies the geneticization of disease and (2) tensions between care for the patient and care for the data.
Constitutive Legislations: Practice, Principles, and Bioethics in/of Indian Stem Cell Terrains
Nayantara Sheoran, Graduate Institute Geneva, Switzerland
Something peculiar takes place when ideologically opposed actors involved in stem cell research and therapy in India utilize or have the term ‘bioethics’ utilized against their practices. While some suggest ‘ethical breaches’ when criticizing the practices of clinics and researchers in India, others advocating and supporting this stem cell research and therapies promise ‘ethical best practices.’ The ethicality of the biological reality in India is thus a constantly contested field, with local and global assemblages instrumentalizing the term ‘bioethics’ to serve their own particular ends. In this paper, drawing on over 2 years of fieldwork with Indian stem cell clinics, labs, policy makers and patients, I look at the way ‘bioethics’ is discursively mobilized and then articulated in practice, policy, and principle. In particular, the paper focuses on how the state and policy makers engage with researchers, physician, and patients to negotiate for legislative changes that are ethically acceptable globally, and ethically viable locally. The language of bioethics is typically couched in Western enlightenment ideas; however, when read alongside what Veena Das calls ordinary ethics in India, the analysis allows for a re-configuration of the term bioethics itself to account for a much more evolved and nuanced globally inclusive bioethics.
The Laws of Radioactive Effect: Genetic Politics, Distributed Agency and Contested Illnesses
Catherine Trundle, Victoria University, New Zealand
This paper explores legal debates about knowledge in contested illness claims. In the 1950s the British government built and detonated a series of nuclear bombs in the Australian outback and over the Pacific Ocean. Around 28,000 servicemen from the Commonwealth participated in these tests. In recent decades these veterans have come to believe that they and their descendants suffer from translocated chromosomes and ‘bad genes’, and consequently have developed a range of illnesses related to radiation exposure. This paper examines a class action before the British Supreme Court in which test veterans attempted to gain recognition, compensation and an apology from the Ministry of Defence. I will explore how claimants and defendants argued over the constitution of knowledge about radiation harm and genetic damage. The case came to hinge on definitions of ‘belief’ versus knowledge’ with regard to the statue of limitations; whether the claimants had made their claim in sufficient time following their initial suspicions, beliefs and research about their ill health. Both sides’ arguments relied on differing definitions of the role of experts – doctors, medical researchers, government officials – and whether the ‘agency to know’ genetic information resided in embodied experience, family narratives and biosocial groups, or external expertise. This paper argues that while veterans argue that they have a type of distributed personhood (Gell 1998), radiation has an omnipotent agency. The Ministry of Defence by contrast responsibilized individual veterans while negating the agency of radiation and the environment.