ACCEPTED OPEN PANELS–Genetics, Genomics, Biotechnology

1. Accommodating A Plurality Of Values When Engaging Emerging Technologies In Sustainability Transitions – On Designing For Safety And Security In A Warming World

Pim Klaassen, Vrije Universiteit Amsterdam; Megan Palmer, Center for International Security and Cooperation, Stanford University

Climate change is a wicked problem [1], which many hope technological innovation will effectively resolve. Technologists themselves frequently claim their work will help pull off sustainability transitions successfully, e.g. to keep the temperature rise within acceptable limits [2] or feed the 10 billion people projected to inhabit Earth by 2050 [3].

However, many factors complicate technologists’ hopeful stories [4]. Firstly, techno-scientific developments will interact reciprocally with perceptions of societal values and needs, whether associated with climate change or not. Insofar as these perceptions diverge, so will the acceptance of technologies, affecting their potential impacts. Secondly, technological developments’ shape and direction is contingent on market and political constraints. This can compromise future technologies’ capacity to serve public interests well, irrespective of any good intentions behind them [5]. Finally, technologies that serve one specific goal – such as mitigating climate change – risk (unwittingly) justifying all means. Solving one problem then potentially means creating others [6,7].

Contributions to this session shed light on how to resolve value conflicts that arise where emerging technologies feature in sustainability transitions, e.g. to sustainable agriculture or a circular- or bio-economy [8]. While focusing on accommodating safety and security to sustainability [9], values like democracy, equality or justice are not excluded. We welcome contributions using transdisciplinary (possibly arts-based) methods geared towards bridging gaps between science, society, policy and industry [10,11]. Since technologies cannot realize sustainability transitions by themselves, we stimulate contributions presenting novel narratives of change, while refiguring the problem space of safety, security and sustainability [12].

References

[1]          Hulme, M. (2009). Why we disagree about climate change: Understanding controversy, inaction and opportunity. Cambridge, England: Cambridge University Press.

[2]          Keith, D. W., & Irvine, P. J. (2016). Solar geoengineering could substantially reduce climate risks—A research hypothesis for the next decade. Earth’s Future, 4(11), 549-559.

[3]          Haraway, D., & Endy, D. (2019). Tools for Multispecies Futures. Journal of Design and Science. https://jods.mitpress.mit.edu/pub/q04b4o74

[4]          Groves, C. (2019). Sustainability and the future: reflections on the ethical and political significance of sustainability. Sustainability Science, 14(4), 915-924.

[5]          Stilgoe, J. (2018). Machine learning, social learning and the governance of self-driving cars. Social Studies of Science 48(1). doi.org/10.1177/0306312717741687

[6]          Van de Poel, I. (2015). Conflicting values in design for values. Handbook of ethics, values, and technological design: Sources, theory, values and application domains, pp.89-116.

[7]          Hulme, M. (2020). Is it too late (to stop dangerous climate change)? An editorial. WIREs Clim Change, doi:10.1002/wcc.619

[8]          Lynch, D., Klaassen, P. & Broerse, J.E.W. (2016). Unraveling Dutch citizens’ perceptions on the bio-based economy: the case of bioplastics, bio-jetfuels and small-scale bio-refineries. Industrial Crops and Products. http://dx.doi.org/10.1016/ j.indcrop.2016.10.035.

[9]          Millett P., Binz T., Evans S.W., Kuiken T., Oye K., Palmer M.J., Yambao K., Yu S., van der Vlugt C. (2019). Developing a Comprehensive, Adaptive and International Biosafety and Biosecurity Program for Advanced Biotechnology: The iGEM Experience. Applied Biosafety 24(2). doi.org/10.1177/1535676019838075

[10]        Klaassen, P., Verwoerd, L., Kupper, F. & Regeer, B. (in press) Reflexive Monitoring in Action as a methodology for learning and enacting Responsible Research and Innovation. In Yaghmaei, E. & I. van de Poel (ed.), Assessment of Responsible Innovation: methods and practices. London: Routledge.

[11]        van der Meij, M.G., Heltzel, A.A.L.M., Broerse, J.E.W. et al. (2018) Frame Reflection Lab: a Playful Method for Frame Reflection on Synthetic Biology. Nanoethics (2018) 12: 155. https://doi.org/10.1007/s11569-018-0318-9

[12]        Loorbach, D., Avelino, F., Haxeltine, A., Wittmayer, J. M., O’Riordan, T., Weaver, P., & Kemp, R. (2016). The economic crisis as a game changer? Exploring the role of social construction in sustainability transitions. Ecology and Society, 21(4). https://doi.org/10.5751/ES-08761-210415

Contact: p.klaassen@vu.nl

Keywords: climate change, emerging technologies, sustainability, safety and security, transdisciplinarity

Categories: Environmental/Multispecies Studies

Genetics, Genomics, Biotechnology

Technologies of Militarism/(In)Security

21. Challenges of surveillance technologies in police and criminal justice systems

Sara Matos, University of Minho; Filipa Queirós, University of Minho; Aaron Amankwaa, Science & Justice RIG, Northumbria University; Ryanne Bleumink, Amsterdam Institute for Social Science Research, University of Amsterdam

Over the past decades, threats of terrorism and organized crime, changes in crime pattern and the nature of legal issues, as well as irregular migration, have been used to legitimize major investments in technological surveillance mechanisms. These mechanisms create regimes of state regulation, surveillance and social control while simultaneously stimulating a culture of data collection and the construction of large information systems. This expansion of surveillance technologies raises major questions about their implications in both police practices and criminal justice systems. So far, the academic debate has been addressing how the use of these surveillance mechanisms may, on the one hand, enhance public security objectives, such as the resolution of crime, and on the other hand pose threats to citizenship and human rights, such as privacy, data protection, and presumption of innocence. The latter scholarship addresses how these technologies contribute to injustice, increased suspicion, and the criminalization of minority populations. Aiming to address democracy, citizenship, transparency, effectiveness/efficiency and accountability issues in the operation of surveillance technologies, this panel welcomes contributions that critically engage with governance patterns for surveillance mechanisms such as, but not exclusively, forensic DNA databases, phenotyping technologies, familial searching, big data, facial recognition systems and predictive policing within different national civic epistemologies. Particularly, how these surveillance mechanisms contribute to policing and criminal justice outcomes and reshape our lives and notions of democracy and citizenship. The original contribution of this panel is the generation of a balanced and research-informed framework to help address the challenges of surveillance technologies.

Contact: filipaqueiros@ics.uminho.pt

Keywords: surveillance technologies; civic epistemologies; policing; democracy; citizenship;

Categories: Genetics, Genomics, Biotechnology

Governance and Public Policy

Technologies of Militarism/(In)Security

33. Death Itself: Technology, Ethics, and Ambiguity

Dylan Thomas Lott, Center for Healthy Minds/University of Wisconsin-Madison; Amanda van Beinum, Carleton University

Modernity in the time of the Anthropocene is marked by a growing, mutating tension between life and death. Even as scientists discover new ways to revive and sustain ex-vivo brains, mass extinctions and life-limiting disasters accelerate. A key engagement of STS research has been to understand rapidly mutating conceptions of “life itself,” mediated through the technological advances of genetic discoveries, cloning, and electronic health records. In this panel we wish to push these insights further to consider how death has changed as a result. How have these shifting conceptions of life itself also affected what it means to die? How can we understand ethics and responsibility in spaces where the very possibility of finite endings has become at once unclear and imminent? 

This panel invites papers that employ STS methodologies to critically examine who (or what) can die, and how (and where) this becomes possible in the complex contexts of modern life. We especially invite investigations that integrate an ethical perspective into this critical work that seeks not only to explore the material aspects of death, dying, and endings, but also to creatively imagine how we might make sense of ambiguous or absolute ends. We also encourage papers exploring the material and ethical aspects of what it means to study this multiplicity of endings from an STS perspective, including those that imagine new, reflexive methodologies for doing so.

Contact: amanda.vanbeinum@carleton.ca

Keywords: death, dying, ethics, end of life, life support technologies

Categories: Medicine and Healthcare

Genetics, Genomics, Biotechnology

Knowledge, Theory and Method

39. Digital Phenotyping –  Unpacking Intelligent Machines For Deep Medicine And A New Public Health

Lukas Engelmann, University of Edinburgh; Ger Wackers, UiT The Arctic University of Norway

Digital phenotyping has become a popular practice in the world of data-driven health research. It has developed into a tool to syphon structured health data from online populations. As a practice, it is hailed to refine the classification and understanding of psychiatric, infectious and chronic conditions. A new phenomics is developed to match the genomics of previous years and close the gap between the genotype and phenotype. In the widest sense, digital phenotyping has become identified with a medical knowledge production entirely based on the analysis of digital borne data, providing new ways of knowing disease with more granular insights from digital data. Digital phenotyping schizophrenia, dementia, the flu or Parkinson’s disease is supposed to overcome vague and unstructured clinical observations and to offer new, highly standardised pathways towards a complete symptomatology. Conceptually, the digital phenotype has been shaped with reference to Dawkins’ elaborations on the ‘extended phenotype’ while its practices are strongly aligned with the ‘deep medicine’ movement, which seeks to build and to exploit vast datasets of different kinds to achieve novel insight into drivers of disease.

Underlying this new conceptual tool are a series of imaginaries that we like to unpack in this panel. We invite contributions that engage the impact of digital phenotyping in mental health research, that reconstruct historical genealogies of such infrastructures and which engage the phantasies of total insight, vast understanding and deep comprehension build into this budding tool at the bleeding edge of digital medical research.

Contact: ger.wackers@uit.no

Keywords: Digital phenotyping, deep medicine, public health, digital epidemiology

Categories: Medicine and Healthcare

Genetics, Genomics, Biotechnology

Big Data

47. Discursive Traps in Global Health: Neglect, Poverty, and Emergence

Lina Beatriz Pinto-Garcia, York University; Mady Malheiros Barbeitas, Sociology – CERMES 3/ Unité Inserm 988 – Ecole des Hautes Etudes en Sciences Sociales – Paris); Bernardo Moreno Peniche, Independent

In global health discourses, vector-borne diseases are typically portrayed as neglected problems that affect people in impoverished settings. Since they inhabit the margins of the economy, so continues the argument, they do not constitute a priority for states nor an attractive market for pharmaceutical companies. To stimulate neglected diseases R&D, public-private partnerships were proposed in the 1990s as a solution that would lure pharmaceutical companies into the game. Also, in 2007, the FDA established the priority review voucher program to promote the development of drugs for diseases considered neglected. Yet, these strategies have been criticized for leaving unchallenged a pharmaceutical development model that is profit-oriented and for obscuring severe differentials of power and influence between the public and the private sectors. In a similar vein, since the 1990s, some of these diseases have also been categorized as ‘emerging’ threats, seeking to highlight their potential of becoming epidemics of global proportions. Yet, this term often helps reanimate colonial stories of containment that regarded the tropics as natural hotbeds of diseases that required strict population management to prevent microbes from spilling over the metropolis and its colonial settlements. Thinking critically about ‘neglect,’ ‘poverty,’ and ‘emergence,’ this panel aims to unpack the politics behind these “official stereotypes” in global health narratives. Is this terminology sufficient to account for the problems that vector-borne diseases represent? Is it always useful to delimit the ways in which possible solutions are framed? What do these categories make visible and invisible? What do they enable and constrain?

Contact: lina.pinto.garcia@gmail.com

Keywords: global health, neglect, emergence, poverty, vector-borne diseases

Categories: Genetics, Genomics, Biotechnology

Economics, Markets, Value/Valuation

Governance and Public Policy

53. Editing future life and biotechnological utopias/ Bio-political materialization and potentialities of CRISPRcas9

Eva Slesingerova, Masaryk university

We are inhabiting multiple bio-political potentialities, futures echoing ideas of life-as-it-could-be. This panel analyzes biotechnological not-only-human networks, their utopian and dystopian potentialities in the context of recombinant DNA technologies. For fifty years, assorted technologies for human genome editing and recombinant DNA have been used. The current applications of genome editing on human germlines have provoked significant attention and raised a number of ethical and legal questions as well. Specifically considering CRISPR/Cas 9 technology, the rhetoric about revolution, new promises, new breakpoints for humankind, also fears and concerns have emerged recently. Speaking about CRISPR/Cas9 and the media frenzy, anthropologist Kirksey (2016) referred to “emergent 21st century biotechnology dreams,” noting that “science fictions and fantasies are quickly becoming facts with CRISPR” which he described as “a gene editing technology that is opening up new horizons for the human species.” Miscellaneous futurities, as material-semiotic reconfigurations, biotechnological utopias, media hypes, are present in the topics of the current genome editing technologies. We meet to bring together various views on questions like:

–              What kinds of biotechnological utopias, spaces of hope and hype, visions, also fears and concerns we face today in the context of human genome editing technologies?

–              Which social and political issues are mirrored and created by these technologies? How they stratify groups of potential patients?

–              What modes of de/politization are involved in the context of editing genome technologies? What kinds of new social control, hierarchies, exclusion, domination but also care, social inclusion can genome editing technologies help accomplish?

Contact: eslesi@fss.muni.cz

Keywords: editing genome, biotechnological utopias, techno-fantasies, biopolitics, CRISPR-Cas9

Categories: Genetics, Genomics, Biotechnology

Medicine and Healthcare

Governance and Public Policy

56. Engineering Extinction: Prospects, Uncertainties, and Responsibilities in Planned Extinction

Josef Barla, Goethe University Frankfurt

While more and more policies are sought to be implemented and countless efforts are undertaken as immediate and urgent responses to the rapid loss of biodiversity—which is often described as the sixth mass extinction in the geological history of the planet—novel genetic strategies are becoming a technoscientific reality for vector control purposes and the containment of so-called invasive species. Aiming at the suppression, if not complete annihilation, of entire species that are considered as pest or ‘out of place’, genome editing techniques such as, for example, gene drive systems are presented as technological solution to manifold epidemiological, environmental, and economic problems. Differing from other forms of extinction—which are often understood as unintentional consequences of the reckless extraction and exploitation of natural resources—these experimental forms of extirpating entire species are raising their own pressing regulatory, ethical, and ecological questions. This panel seeks to explore the prospects, promises, and uncertainties associated with novel genomic strategies for controlling biological vectors and undesired species. To what problems are these techniques responding, and how is responsibility addressed and embedded in the narratives of a controlled species extinction? How and on what scale is risk assessed? How is life and death reworked on a molecular scale? How are these novel approaches not only irritating prevalent understandings of a linear progression of life into death, but also practices of governing life if death and even extinction becomes that which entails value?

Contact: barla@soz.uni-frankfurt.de

Keywords: Extinction, Genome Editing, Bioeconomies, Governance, Vector Control

Categories: Environmental/Multispecies Studies

Genetics, Genomics, Biotechnology

Knowledge, Theory and Method

59. Ethea Alternativa:  Undoing Capital’s Techno-Economic, Exploitative Thrall over the Earth

Brian Noble, Dalhousie University

Contact: bnoble@dal.ca

Keywords: Ethoecologies, Counter-Capitalism, Indigenous Peoples’ Alliances, Earth Futures, Disruptive Techniques

Categories: Postcolonial/Decolonial STS

Environmental/Multispecies Studies

Genetics, Genomics, Biotechnology

69. Global Imaginaries of Precision Science: Diversity, Inclusion and Justice

Sandra Soo-Jin Lee, Columbia University; Janet K. Shim, University Of California, San Francisco

Precision science targets individual and group differences as a path towards greater accuracy, efficiency and efficacy by using techniques of big data analytics, algorithmic prediction, and large-scale data sharing and applying them in a growing number of domains.  This panel focuses on the sociotechnical imaginaries of the promise of precision that fuel the increasingly global infrastructure for collecting personal data and biospecimens in many different domains. For example, the promise of precision has been motivated by and operationalized in the quest for greater inclusion and diversity of historically underrepresented groups in precision medicine research as evidenced in initiatives such as the US All of Us Research Program and the Global Alliance for Genomics and Health. Extending beyond biomedicine, these processes are being taken up in studies of genetic associations of socio-behavioral traits such as criminality and educational attainment that are leading to new fields of “precision forensics” and “precision education.” This panel calls for papers that interrogate the constituent concepts, practices, and discourses of precision science – its actors, institutions, networks, values and cultures – and its applications and uptake in a wide range of domains, including medicine, criminal justice, and social policy. We are interested in examining forms of knowledge and practices in precision science, their impacts on emerging subjectivities and data-driven publics, and the development of frameworks on justice, ethics and inclusion. We aim to use this panel to build a global collaboratory of scholars who will use this opportunity to share their work and build future collaborations.

Contact: sandra.lee@columbia.edu

Keywords: Precision medicine, sociogenomics, ethics and justice, knowledge production, Diversity

Categories: Big Data

Genetics, Genomics, Biotechnology

Race/Racialization/Indigeneity

75. Health Made Digital

Hined A Rafeh, Rensselaer Polytechnic Institute; Danya Glabau, The Brooklyn Institute for Social Research

With the rise of digital information technologies, the work of aggregating and exchanging data about our health and habits has become faster and easier. From genetic screening to self-tracking apps, and from electronic medical records to digital data archives, digital technologies are reconfiguring healthcare systems and our notions of health. Following from pioneering STS work on genetic health data (Nelson 2016), precision medicine (Ferryman and Pitcan 2018), and self-tracking devices (Lupton 2016, Schull 2016, Nafus and Neff 2016) on the one hand, and recent work on the “bioeconomy” (Birch 2017, 2018) and speculative bioeconomic futures (Benjamin 2016) on the other, this panel aims to stage generative exploration of what counts as health data in the digital age and how it impacts individuals, patient communities, and practices of public health. In a variety of professional and geographic contexts, we hope to consider questions like: What gets considered health data by regulators, and how does that shape its governance and exchange? How do information systems adapt to the introduction of new forms of “health” data, like social media use or purchasing habits? And what publics and expert communities will, or should, have a say in defining, collecting, and governing new forms of health data? By framing these questions in STS literatures, this panel will illustrate how the discipline’s approach to defining slippery objects like “digital health” and “health information” contributes to understanding health and biomedicine as deeply political matters.

Contact: danya.glabau@gmail.com

Keywords: digital health, health information, bioeconomy

Categories: Medicine and Healthcare

Information, Computing and Media Technology

Genetics, Genomics, Biotechnology

103. Making Futures by Freezing Life: Ambivalent Temporalities of Cryopreservation Practices

Thomas Lemke; Sara Lafuente-Funes, Institute for Sociology, Goethe University, Frankfurt; Ruzana Liburkina, Goethe-University Frankfurt; Veit Moritz Braun, Goethe University Frankfurt/Main

The preservation of biological matter at extremely low temperatures has gained increasing prominence in medicine, plant breeding, and wildlife conservation over the last decades. Stored at temperatures of down to -196°C, cells and tissues are frozen in time. Oocytes, stem cells, germplasm, and sperm endure while the world keeps on changing. However, cryobanks are not simply stockpile facilities or archives. The (possibility of) storing organic materials creates potentialities and contingencies. Frozen cells become vital deposits, valuable backups, options to be considered.

Contrary to the prevalent idea of freezing as stabilizing, fixing, and containing bio-objects, this panel seeks to explore the generative dimensions of cryopreservation as a way of modifying relations and turning biological matter into things-to-become (Stephens et al. 2018). Putting organic materials ‘on ice’ shapes and redefines present socialities, politics, moral economies, and infrastructures. By the same token, it changes the ways in which futures are anticipated and enacted. Frozen matter alters existing and creates new temporalities.

We are looking for contributions that trace notions such as “anticipation”, “suspension”, “spaces of as-if”, “hope”, or “expectation” in the realm of cryopreservation. Participants are invited to ground these concepts in empirical insights into practices of cryo-banking and the materialities of frozen tissue.

More at https://cryosocieties.uni-frankfurt.de/work/cfp-easst/

Contact: braun@soz.uni-frankfurt.de

Keywords: cryopreservation, time, biobanks, future, biology

Categories: Medicine and Healthcare

Genetics, Genomics, Biotechnology

Environmental/Multispecies Studies

120. New Technologies of Risk:  Bioeconomies of Prediction and Therapeutic Prevention

Emily Elizabeth Vasquez, Columbia University; Amaya Perez-Brumer, University of Toronto

Health is now elusive.  According to biomedical standards, we instead likely living at risk for disease.  Further, we may be diagnosed with a “pre-disease” or labeled among the “most at risk,” be it for HIV, diabetes, heart disease, or types of cancer. To avoid disease itself, we submit to medical interventions at the advice of not just doctors, but now also public health officials who sometimes not so jokingly joke about putting the first-line diabetes drug Metformin or statins to reduce cholesterol into our water supply.  People of diverse genders and sexualities, labeled “at high risk,” are prescribed HIV medicines to minimize their risk of contracting disease. Risk reducing mastectomies are recommended for carriers of the BRCA1/2 gene mutations. Indeed, new biomedical technologies, including screening algorithms and risk scores, genetic tests for predisposition, and an array of “drugs for life” are shifting understandings of population-level prevention and the right to health globally.  These technologies not only animate new subjectivities and inequalities among the “almost ill,” but also index growing economies centered on research, development, marketing, and intellectual property that increasingly extend to low- and middle-income country contexts.  This panel seeks to bring together papers that explore the political economy driving new technologies of risk and their implications for publics across contexts, for health governance, equity and activism, and for how we understand health and prevent disease.  To encourage comparative perspectives and an analysis of these technologies with global reach, contributions from non-Western countries and the Global South are particularly welcome.

Contact: eev2105@columbia.edu

Keywords: Bioeconomy; Risk; Biotechnology; Global Health; Inequality

Categories: Genetics, Genomics, Biotechnology

Medicine and Healthcare

Gender/Sexuality/Feminist STS

134. Pharmaceutical and diagnostic futures: innovation, governance and practice

Paul Martin, Department of Sociological Studies, University of Sheffield; Stuart Hogarth, University of Cambridge; Fred Steward, Policy Studies Institute

The development, marketing and use of new pharmaceutical and diagnostic products is playing an increasing role in shaping healthcare across the globe. Major changes are underway that may represent a fundamental transition in the sector, driven by the search for new sources of value, emerging technologies and systemic shifts in healthcare provision. Novel targeted and biological products are increasingly tied to new diagnostic tests facilitating the development of personalised medicine. A wave of ultra-expensive speciality and orphan medicines are posing major challenges for both access and existing regulatory frameworks and reconfiguring relations between patients and industry. The dynamics of pharmaceuticalisation and diagnostic innovation are extending the reach of Western medicine and international bioscience companies into new markets and the Global South, raising important social and ethical questions. This Open Panel invites papers related to pharmaceutical and diagnostic studies. We welcome papers on: the political economy of the global bio/pharma and diagnostics industry, new and alternative forms of knowledge production, the development of novel biological and speciality products, the changing role of patients in innovation and regulation, the challenge to existing forms of governance and Health Technology Assessment,  medicines for neglected and rare conditions, and situating pharmaceutical and diagnostic innovation within broader health system transitions. In particular, we are keen to encourage submissions from critical, feminist, post-colonial and Global South perspectives. The Panel aims to help build a global network of STS scholars working in this area and develop collaborative research on the major changes underway in this key sector.

Contact: paul.martin@sheffield.ac.uk

Keywords: Pharmaceuticals, diagnostics, political economy, knowledge production, governance

Categories: Medicine and Healthcare

Genetics, Genomics, Biotechnology

140. Race and Biomedicine Beyond the Lab: 21st Century Mobilizations

Melissa Creary, University of Michigan, School of Public Health; Nadine Ehlers, University of Sydney; Zimitri Erasmus, University of the Witwatersrand; Vivette Garcia Deister, UNAM; Amade M’charek, University of Amsterdam – AISSR; Anne Pollock, King’s Col

This open panel invites analyses of the ways that race and biomedicine are mobilized beyond the lab in the 21st century. There is already rich STS scholarship that accounts for the construction of race in scientific practices and the epistemological problems that entails. In this open panel we seek to shift the focus beyond the lab: how is the science understood, constructed, contested, and diversely deployed in public arenas, to what ends, and with what effects?

We seek to foreground how non-scientists are at the forefront of novel, plural, generative deployments of biomedical ideas of race. On the one hand, these ideas are being used by broader stakeholders to maintain or revive historically entrenched ideas about race, to reinforce difference and inequality. On the other hand, biomedical ideas of race are also strategically mobilized in alternative directions, to stake claims and resist race-based injustice. We hope that the papers will span wide-ranging geographies and domains. Papers might explore race as mobilized by (1) inhabitants of environments, e.g, epigenetic impacts of toxicity and medical hot-spotting; (2) consumers within markets, e.g, genetic ancestry testing and race-based pharmaceuticals; (3) citizens and professionals, e.g. deploying forensic genetics in genocide claims or nation-state-specific framings of group rights. 

The panel will build on and expand the work of the emerging international network gathering around the theme of Race and Biomedicine Beyond the Lab (RaBBL), exploring how individuals and groups in wide-ranging contexts reimagine and seek to reconfigure racial futures.

Contact: anne.pollock@kcl.ac.uk

Keywords: race, biomedicine, health disparities, medical consumers, human rights

Categories: Race/Racialization/Indigeneity

Genetics, Genomics, Biotechnology

STS and Social Justice/Social Movement

142. Rare Disease Policies: From Exceptionalism Towards a ‘New Normal’?

Conor Douglas, York Univeristy

The emergence and consolidation of rare diseases as a distinct area of public health policy since the 1980s has been extensively studied. STS researchers have documented the establishment of this distinct policy domain and the associated orphan drug policies as the result of negotiations, struggles and collaborations between patient organizations, biomedical communities, public authorities, and the pharmaceutical and biotech industry. Yet, interpretations differ as of the transformative effects of these partnerships. Some stress the role of patient organizations as a decisive driver for R&D policies in domains that had long been neglected. Critics argue that it is a form of exceptionalism which is being “gamed” by the pharmaceutical and biotech industry by “slicing” common diseases into multiple rare diseases in order to occupy highly profitable niche markets.

This debate is still highly relevant against the backdrop of high drug prices. What is more, the advent of personalized medicine, digital medicine and ‘advanced therapy medicinal products (ATMPs)’ potentially means an increasing ‘orphanization’ of common diseases. This leads to questions about new business models in pharmaceutical commercial and non-commercial innovation, about (un)affordability for citizens, about regulatory policies and about inclusive health care insurance systems. Where rare disease and orphan drug policies -once considered “exceptional”- stand in this landscape is worth further exploration.

These outstanding questions make expanded and deepened STS analysis of rare disease policies necessary. The panel invites contributions from different national and regional contexts and varying intellectual perspectives.

Contact: cd512@yorku.ca

Keywords: rare diseases, rare disease policy, pharmaceutical innovation

Categories: Governance and Public Policy

Genetics, Genomics, Biotechnology

Economics, Markets, Value/Valuation

145. Re-evaluating the high-tech and the low-tech: ideals and ideologies of the material

Hannah Cowan, King’s College London; Charlotte Kühlbrandt, King’s College London; Natassia Brenman, The University of Cambridge

This panel invites participants to question how values of high- and low-tech become attached to and emerge from particular kinds of materialities. There is growing concern in STS research around topics that get labelled ‘technoscience’, such as CRISPR genetically-engineered babies and cyborg-esque uses of artificial intelligence. But here we want to trouble scholarly focus on the materialities that get labelled high-tech, by thinking about the “lowness” of low-tech (such as water supply, housing infrastructures etc). We question taken-for-granted urgencies created by the politics and ethics of the high-tech and point to stagnated material relations that perpetuate economic inequality. Building on new materialism’s attention to the mundane as well as its often-neglected roots in historical materialism, this panel invites participants to think about how different kinds of materialities matter in particular spatiotemporal milieus. We encourage papers from different theoretical or ideological perspectives to ask: When and how should STS studies follow the biomedical endeavour to chase emerging worlds, and when should we pay more attention to the present, or even dare to imagine our own worlds? How should we as STS scholars collaborate or align ourselves with different kinds of materialities? And what are the effects of how medical practitioners, highly funded organisations, and STS scholars themselves, care for these different types of materialities?

Contact: Hannah.Cowan@kcl.ac.uk

Keywords: New materialism, Historical materialism, high-tech, low-tech, inequality

Categories: Genetics, Genomics, Biotechnology

Medicine and Healthcare

STS and Social Justice/Social Movement

147. Reproduction in the Post-genomic Age

Jaya Keaney, Deakin University; Sonja Van Wichelen, University of Sydney

This panel will bring together scholars working on the intersection of reproduction and post-genomic science, also called the new biologies. Encompassing fields such as epigenetics, microbiome research and immunology, post-genomic science offers new biological theorisations that complicate the agency of the gene in determining human individuality. Reproduction—and pregnancy in particular—is a privileged site in this research, with transmissions between foetus and gestator offering biological models that challenge dominant ideas of personhood as gene-centred and separate from gestational and non-human environments. The reproductive body is so central to these fields that, as Mansfield and Guthman (2015, 3) write of epigenetics, we can conceptualise them as a ‘reproductive science’.

The collision of post-genomic research and constructions of reproduction contains both substantial potential and risk. In foregrounding how reproductive and nonhuman environments shape the distribution of life outcomes, the new biologies can validate through scientific discourse a concept of reproduction as a more-than-human milieu. Such a conceptualisation has long animated reproductive justice approaches, and is at the heart of a recent social sciences turn to ‘environmental reproductive justice’ (Lappé, Hein and Landecker 2019). At the same time, in practice post-genomic studies often construct pregnancy and motherhood as coherent, natural processes that translate easily across cultural and species boundaries, naturalising maternal care and longstanding discourses of responsibility that stratify reproduction across raced, classed and geographic axes (Martin 2010; Warin et al 2012). Seizing these rich tensions, this panel welcomes papers invested in questions of reproductive experience and justice in changing post-genomic times.

Contact: jaya.keaney@sydney.edu.au

Keywords: reproduction; post-genomic science; biology; pregnancy; environment

Categories: Gender/Sexuality/Feminist STS

Genetics, Genomics, Biotechnology

Environmental/Multispecies Studies

165. STS Approaches to Social Epigenetics and the Developmental Origins of Health and Disease

Charles Dupras, McGill University; Martine Lappe, California Polytechnic State University, San Luis Obispo; Megan Warin, University of Adelaide

Over the past decade, social epigenetics and the developmental origins of health and disease (DOHaD) have been enthusiastically mobilised to argue for more equitable and just environmental and social policies. At the same time, science studies scholars and others have raised concerns about these fields. These include the human rights impacts of using individual epigenetic information in insurance, forensics and immigration decisions, and the technical, ethical and policy challenges of protecting epigenetic data and privacy in multi-omic research. Further, feminist scholars have documented how DOHaD-based approaches to research, health prevention and policymaking often blame women and perpetuate marginalisation, stigmatisation and discrimination despite their promise. These concerns call for ongoing attention given the continued focus on individual responsibilities for health, expansion of personalised medicine, and growing availability of direct-to-consumer epigenetic tests globally.

This open panel invites scholars working across various disciplines to engage with questions about the social and ethical dimensions of social epigenetics and DOHaD research, including its practices, promises, and potential futures. We welcome papers that explore how STS scholars can intervene in and counter the reductionist power of social epigenetics and DOHaD, ethnographic studies that develop innovative methods to rethink classic criticisms and imagine how things might be otherwise, and scholarship addressing the biologisation of environments and social structures. Discussions may touch on expectations of postgenomic research, promissory and cautionary discourses, epistemological and empirical implications of the new ‘biosocial’ genome, the unequal embodiment of location and time, and lived experiences of epigenetic and DOHaD research across different communities.

Contact: charles.dupras2@mcgill.ca

Keywords: Social Epigenetics, DOHaD, Biologisation, Reductionism, Human Rights

Categories: Genetics, Genomics, Biotechnology

Gender/Sexuality/Feminist STS

Race/Racialization/Indigeneity

174. Techniques of Resilience. Coping with the Vulnerabilities of Hybrid Bodies

Nelly Oudshoorn, Mw.

In recent years we have seen the introduction of more and more technologies that operate under the surface of the body. These ‘body companion technologies’ (Oudshoorn 2020) not only do what they are supposed to do, but simultaneously transform the fragility of bodies by introducing new vulnerabilities. Living with a technologically reconfigured body therefore requires a life-long trajectory of building resilience. Adopting the perspective that vulnerability and resilience is constituted and achieved in a complex interplay with the materiality of bodies, technologies, and the socio-technical environment, this panel invites papers that critically explore and conceptualize how ‘everyday cyborgs’ (Haddow et al 2015) learn to live with the vulnerabilities of their hybrid bodies. Understanding techniques of resilience is important because it enables us to account for vulnerabilities without turning cyborgs into passive victims of their implants or prostheses. How do people living with implants and prostheses sense and make sense of their hybrid  bodies? What techniques do they use to keep their bodies alive? What social and material resources are available to them that can assist them  to adapt positively to the new vulnerabilities they face? How do gender, age, ethnicity, and global differences in access to these high-tech devices affect which bodies materialize as everyday cyborgs? The panel aims to contribute to socio-material approaches to vulnerability by foregrounding technologies inside bodies, which are largely absent in most STS studies on vulnerability.

Contact: n.e.j.oudshoorn@utwente.nl

Keywords: hybrid bodies, cyborgs, vulnerability, resilience, medical implants

Categories: Genetics, Genomics, Biotechnology

Gender/Sexuality/Feminist STS

175. The (In)Visible Labour Of Translation: Creating Value In Translational Medicine

Rachel Faulkner-Gurstein, King’s College London; Clémence Pinel, University of Copenhagen; David Wyatt, King’s College London

Substantial public and private investments have been funnelled into building the infrastructure of translational medicine which, according to proponents, offers huge potential for advances in health and for economic growth. Such potential, however, is predicated on a variety of labour practices. It is performed by many different categories of worker, from research nurses to data scientists, in various settings and locations. This labour is highly uneven, and often unnoticed or unseen by policymakers and the public. In this panel, we focus attention on the labour that facilitates and underpins translational medicine as a key feature of life sciences research and the bioeconomy.

We are keen to explore the ways in which labour is understood, organised, and valued—including interrogating the hierarchical and gendered arrangements within which various stratified forms of labour take place. We want to question how such structures enable some practices to be rendered invisible and devalued, while some are highly privileged, prestigious, and valuable. We are equally interested in exploring if and how variously situated categories of workers contribute to the production of knowledge through their support, administrative, or care practices.

We invite papers from various disciplinary, empirical and theoretical perspectives to question what it takes to produce valuable knowledge in contemporary translational medicine. This panel contributes to the growing body of STS scholarship on the bioeconomy and translational medicine, as well as literature exploring the constitutive role of care in the production of knowledge and value.

Contact: david.wyatt@kcl.ac.uk

Keywords: labour, care, value, translational medicine, bioeconomy

Categories: Medicine and Healthcare

Genetics, Genomics, Biotechnology

Economics, Markets, Value/Valuation

177. The “Contemporary Synthesis” of Race and Biotechnology in Emerging/Developing Worlds

Tien Dung Ha, Cornell University

How are race and racial differences conceptualized, molecularlized and mobilized in emerging and developing worlds? Scientists from racial and ethnic minority backgrounds are pushing for the diverse inclusion of underrepresented groups in biomedical research. Duana Fullwiley (2014) argues that the increasing need for “diversity” produces a “contemporary synthesis” between the conceptualization of race as biological categories and the politically-inclusive call for “diverse” representation in biomedical research. This panel seeks to advance this “contemporary synthesis” argument by exploring ways that science and medicine, a historically-imperial tool of control and colonization, have taken on a new role in building national science, aiding economic development, and constructing national identities among these postcolonial and emerging states.

The panel explores how different forms of biotechnologies are giving rise to new configurations of bioeconomies and biopower that are shaping the governmentality, sovereignty, identity and bodies of the emerging/developing worlds. To this end, the panel is motivated to unpack a series of questions including (but not limited to):

1. What are the specific conditions that shape the knowledge making of race science in developing worlds?
2. How do race and racial differences become co-opted into postcolonial science projects?
3. How do we account for transnational networks of people, funding, capital, data, and infrastructure that refigure national belonging and state politics?
4. How are populations ethnically and racially relabeled inscribed and categorized amid the forces of race science and the global pharmaceutical industry?
5. What does “diversity” mean in biomedical research in these emerging/developing worlds?

Contact: dvh27@cornell.edu

Keywords: genomics and identity, contemporary synthesis, molecularization of race and racial differences, diversity in postcolonial science, politics of inclusion

Categories: Genetics, Genomics, Biotechnology

Race/Racialization/Indigeneity

Postcolonial/Decolonial STS

178. The Bio(Techno)logical Politics of Synchrony

Rachel Vaughn, UCLA Institute for Society & Genetics

Michelle Rensel, UCLA Institute for Society & Genetics

We are a behavioral endocrinologist and a feminist food and discard studies scholar exploring the 30+ year history of science behind the search for menstrual synchrony and its extension to modern-day biotechnologies. In our research we suggest that the persistent search for synchrony is exemplary of broader sociopolitical and scientific interest in controlling and making manageable (i.e., predictable and regular), if not marketable, biological processes presumed ‘female.’ We also consider the gendered, classed and racialized assumptions embedded within the design or ‘re-design’ of biotechnologies of health, wellness, and bodily management. This open call for panel participants seeks interdisciplinary inquiries into a host of critical, feminist and anti-colonial interpretations of the technoscientific, including interventions and capitalist consumer objects questing after ‘optimal’ timing, synchrony and bodily management—from biohacks to the rise of sustainable menstrual management products, from nutritional, hormonal and cycle-tracking apps to technological re-design aimed at mediating or reducing toxic exposures, waste and its multiple lifespans and regenerations. As interdisciplinary, contingent faculty striving to maintain creative research programs in spite of precarious employment, we aim to cultivate an inclusive space for research bridging the life sciences and humanities. We seek to learn from other scholars with similar research or design interests, and to create a cross-disciplinary, cross-generational opportunity within which we might support publication outcomes on these themes. To this end, we especially welcome scholars who would consider pre-circulating and workshopping their materials for thoughtful, mutual feedback.

Contact: rvaughn@women.ucla.edu

Keywords: Synchrony,  Discard, Biotechnology, Life Sciences, Feminist Science & Technology Studies

Categories: Gender/Sexuality/Feminist STS

Genetics, Genomics, Biotechnology

Postcolonial/Decolonial STS

179. The changing landscape of genetic databases: Blurring boundaries between collection and practice

Rafaela Granja, Communication and Society Research Centre (CECS); Gabby Samuel, King’s College London /Lancaster University

In recent years, the collection, analysis, processing, and use of genetic data has grown massively, leading to the establishment of large DNA databases in both the health and forensic arena. More recently, and due to the increasing number of companies offering direct-to-consumer genetic tests, there has been a significant increase of recreational genetic databases. Coupled to this expansion, we have been witnessing a blurring of boundaries between previously distinct kinds of genetic collection and genetic practice: some genetic databases are being used beyond the purpose for which they were originally intended, for example, recreational DNA genealogy databases are being used for criminal investigation purposes.

The future may rest not on further building and expanding mass databases, but rather on the collation of existing genetic information and the exploitation of its potential. In a time of data abundance, it is therefore important to understand how such data is being conceived and appropriated by a wide range of actors, including policymakers, researchers, private companies and citizens.

We invite both theoretical and empirical contributions that critically engage with the social, ethical and techno-political dimensions posed by the blurring of boundaries between different types of genetic databases. Specifically, we aim to explore which social actors and epistemic cultures have been playing the leading role in the establishment and regulation of databasing systems, what values and social norms have underpinned this, and/or what ethical and social principles, such as privacy, consent, altruism, solidarity, and reciprocity are taken into account when considering genetic databases.

Contact: r.granja@ics.uminho.pt

Keywords: genetic databases; recreational genealogy databases; health; forensic

Categories: Genetics, Genomics, Biotechnology

Economics, Markets, Value/Valuation

STS and Social Justice/Social Movement

197. Towards a Critical Medical STS

Hined A Rafeh, Rensselaer Polytechnic Institute; Rebecca Monteleone, SFIS – Arizona State University; Yesmar Semaj Oyarzun, Rice University

In a world increasingly governed by technoscientific understandings of human bodyminds (Schalk 2018), what might a critical medical STS offer in theory and practice? Through this panel, we aim to contribute to a growing critical and intersectional medical STS research agenda, canon, and community, that centers on the contributions to STS understandings of science and biomedicine from critical race, critical disability, queer, and feminist perspectives. We seek submissions that engage critically with both their own subject matter and with current STS theory and practice to identify pressure points, generative alternatives, and productive coalitions in which to situate ourselves. Drawing on the work of scholars like Dorothy Roberts, Alondra Nelson, Aimi Hamraie, Kelly Fristch, and Emily Martin, we seek to explore what commitments, practices, and alignments STS scholars can and should make in the pursuit of scholarship and praxis regarding medicine, health, illness, and governance.

This panel invites work that aims to cultivate community, practice, and theory that is attentive to multiple matrices of institutional, personal, political and material oppressions in subjects relating to medicine, health, and illness. We welcome presentations that consider questions related to or offer provocations on topics including but not limited to:

– Epistemologies, practices, and perspectives that acknowledge the situated, embodied, or experiential expertise of pathologized bodyminds;

– Re-imaginings, redefinings, and rearticulations of bodyminds through relational practices;

– Interrogation and unsettling of medical authority, categorization, and its relationship to governance; and

– Processes of commercialization, professionalization, and design and deployment of biomedical technologies

Contact: yesmar@rice.edu

Keywords: health; illness; biomedicine; medicine; healthcare

Categories: Medicine and Healthcare

Genetics, Genomics, Biotechnology

Knowledge, Theory and Method