ACCEPTED OPEN PANELS–Race/Racialization/Indegeneity

11. Assessing Policy Mechanism of “Avoiding Group/Community Harm”

Shirley Sun, Nanyang Technological University

This panel seeks to examine the principle of “avoiding group/community harm” and assess whether this research ethics policy mechanism is adequate to prevent/reduce harm for the minority populations/groups. Because of their position in society, some groups may be at risk of experiencing harm from research.  For example, the usage of race and ethnicity in human genome variation studies has been demonstrated to be problematic (Benjamin, 2009; Bliss, 2011; Duster, 2015; Hinterberger, 2012; M’Charek, 2013; Tallbear, 2013).  Nonetheless, such usage persists.  For example, the National Human Genetic Research Institute (NHGRI) is engaged in race/ethnicity-labeled population genomic research and funds projects such as “National Cooperative Study of Hereditary Prostate Cancer in African Americans”, and “Attention Deficit Hyperactivity Disorder among Hispanic Children”. Such projects are also shaping the future of precision medicine.

The problem of potential harm to human subjects at the group level is typically handled by resorting to the research ethical framework of “avoiding group harm”. In practice, researchers typically seek local ethics board review, hold consultations with concerned group(s), disclose research results ahead of time, and ensure benefits are made available to the groups.  Nonetheless, de Vries et al. (2012) has shown that if genomic research is conducted on groups that are already experiencing stigma and discrimination, such studies still impose greater harm than good on these groups. 

Given de Vries et al. (2012)’s finding, it is important that we paying attention to hidden harms to groups, instead of thinking that the policy mechanism has addressed the problem.  Historical, contemporary, theoretical and/or empirical papers on how members of groups may be vulnerable in research and identify strategies that stakeholders can take are all welcome.

Contact: hlsun@ntu.edu.sg

Keywords: Group harm, minority population, special population, vulnerability, race/ethnicity

Categories: Knowledge, Theory and Method

Governance and Public Policy

Race/Racialization/Indigeneity

12. Asymmetrical Confluence: Justice, Inclusion, and the Quest for Health Equity

Sarah Blacker, Department of Anthropology, York University; Melissa Creary, University of Michigan, School of Public Health

The intentional inclusion of historically underrepresented and marginalized groups in the design of clinical trials, public health initiatives, and biomedical therapies has been an ignored practice. Today, however, a new paradigm has opened up within which public health, genomics, and precision medicine initiatives have begun to prioritize the inclusion of marginalized groups–often at the prompting of funding agencies (Lee, 2019). How are biomedicine’s aspirational visions of a new era of inclusion and justice playing out on the ground?

Bounded justice (Creary) is a biopolitical and bioethical concept that illuminates how programs, policies, and technologies focused on justice (usually through so-called inclusionary actions) do so without recognizing how the beneficiaries have historically embodied the cumulative effects of marginalization, thus undermining the effectiveness of the intended justice.  This panel invites papers that make empirical and theoretical contributions to the intersectional, interdisciplinary viewpoints of how bounded justice is produced through biomedical and public health initiatives in neo-, settler, and postcolonial contexts. What are the ways in which inclusionary means towards health equity may undermine the (re)producibility of justice?  What does this intention towards inclusion say about the quantification of differential life worth (Murphy, 2017)?  How do technoscience projects “innovate inequity” (Benjamin, 2016)?  What is the role of researchers in working with communities to help create space for justice without bounds?  To interrogate the means and ends of STS in different places, we particularly welcome papers that pose questions about the complicated assumptions of justice in the global south.

Contact: sblacker@yorku.ca

Keywords: justice, public health, biomedicine, postcolonial/decolonial STS; global south; health equity

Categories: STS and Social Justice/Social Movement

Race/Racialization/Indigeneity

Postcolonial/Decolonial STS

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

108. Materiality, Knowledges, Inequalities: Multiplicity and Sovereignty in a Post_Colonial World

Katharina Schramm, University of Bayreuth; Uli Beisel, University of Bayreuth

The concept of multiplicity has gained traction in STS over the last decade. This has allowed for analyses of contingent relations rather than discrete objects. It has also brought topological inquiries of knowledge-making practices and infrastructures to the fore. The repeated emphasis on complexities beyond plurality has focused our analytical attention on multi-directional processes of relating, such as co-existence, ambivalence, but also rejection and failure. However, regulatory and epistemic practices are bound to institutions and infrastructures, i.e. they are materially grounded, highly contested and unequally distributed. Inequalities are not only spatially inscribed on a global scale, but also temporally layered through past injustice and lasting legacies of colonialism and imperialism. Recognizing this, the panel asks how we can conceptualize the tensions between multiplicity and sovereignty as they emerge in recent debates around scientific specimens and technological infrastructures. Instead of dissolving the tension, we seek to take it as a starting point for a critical analysis of global knowledge circulations. We are interested in papers that trace the historical and spatial circulation and political traction of epistemic and material objects – from colonial human remains to blood, tissue and DNA-samples; from global waste to ethnographic collections. What is at stake and how can we move from here?

Contact: uli.beisel@uni-bayreuth.de

Keywords: multiplicity, materiality, knowledge, inequality, circulation

Categories: Postcolonial/Decolonial STS

Race/Racialization/Indigeneity

Knowledge, Theory and Method

136. Politics and practices in the ethnographies of legitimate knowledge

Fatima Elfitouri, King’s College London; Cinzia Greco, University of Manchester

The political epistemology of ethnography has underwent significant revision since at least the 1970s, exploring the asymmetries of power between the ethnographers and the other participants, the positionality of the ethnographer, and the ways in which ethnographic knowledge is produced. Given ethnography’s roots in anthropology, however, most of the reflection has focused on cases in which the ethnographers hold more power and legitimacy in the global production of knowledge than the other participants.

In this panel we aim to explore the politics and practices of ethnography in fields characterised by highly legitimate knowledge, cases in which the ethnographers often hold less symbolic power, including but not limited to scientific, technological and medical knowledge.

We aim to analyse the asymmetries of power arising both between the actors and between them and ethnographers and the situated, contextual and political nature of knowledge. Such analysis will be applied to different strata, including the divide between expert and lay, local and global/universal, “objective” and militant knowledge, and the hierarchies between disciplines based on prestige and “scientificity”. We will also explore how official roles, formal qualifications, as well as class, gender and race/nationality/ethnicity, structure the production of knowledge.

Ethnographers bring their own positionality to the field, and this panel will also explore the conditions of the production of the ethnographers’ gaze. Further, it will explore how STS researchers can deal with asymmetries of power between “hard” and “soft” sciences and produce knowledge that is relevant for policymakers and the society at large.

Contact: cinzia.greco@manchester.ac.uk

Keywords: Ethnography, Knowledge, Asymmetries of power, Methodology, Positionality

Categories: Knowledge, Theory and Method

Gender/Sexuality/Feminist STS

Race/Racialization/Indigeneity

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

148. Re-scaling outer-space(s)

James Lawrence Merron, University of Basel; Davide Chinigò, Stellenbosch University; Siri Lamoureaux, Max Plank Institute, Halle

The gaze into outer-space is mediated from a position on (or near) earth, one that is emplaced within specific social, technological, economic and historical conditions (Seth 2009). Locations near observatories and satellite launch sites are often represented as ‘empty spaces’ (Walker & Chinigò 2018) with no history and no people, but full of promises for future developments – a normative frame about the role of scientific progress to shape the future of humanity that recalls an earlier colonial imagination. Space science infrastructures are thus intentionally isolated from the ambient noise of modern life (Agar 1994) and potentially explosive events (Redfield 2002). When people from the outside do come close, they are constructed by management as interference, collateral danger, or recipients of development.

Enmeshed within Euro-American imaginations of space and place (Messeri 2016), we juxtapose cosmic imaginaries of outer-space with outer-spaces. By ‘rescaling’ these imaginations we open up a discussion about the histories and lives of people who occupy places on the periphery of ground-based space science infrastructures. This panel therefore reassesses cosmic imaginations from the perspective of the margins, intended in geo-political terms, bringing into sharp focus the role of localities in non-western contexts that re-calibrate the scale of outer-space and the possibilities of becoming in ‘outer-spaces’. We invite papers that integrate a social science approach to outer-space within the growing discussions inspired by postcolonial STS (Harding 2011) that must address the problem of universal models and regional realities, but do so without resorting to explanations of “local culture”.

Contact: james.merron@unibas.ch

Keywords: outer-space, Africa, postcolonial STS, colonialism, periphery

Categories: Postcolonial/Decolonial STS

STS and Social Justice/Social Movement

Race/Racialization/Indigeneity

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

173. Teaching interdependent agency: Feminist STS approaches to STEM pedagogy

Kalindi Vora, University of California Davis; Maya Cruz, University of California – Davis; Anita Say Chan, University of Illinois, Urbana-Champaign

This panel discussion of STEM graduate training brings together insights from feminist theory with social studies of science to address deep bias in scientific research to suggest methods and frameworks that produce more accountable, accurate and responsible scientific research. This panel is interested in talking about how feminist STS (fSTS) scholars are using, or exploring the use of, the critique of objectivity to address biases in science. How are we engaging with STEM graduate education to teach a more nuanced “situatedness” (Haraway 1988) in culture and history to produce more responsible and accountable science?

Research in STEM education suggests that integrating socio-cultural context and communal values into STEM education can increase recruitment and retention of women, under-represented minorities (URMs), and first-generation students in STEM. Building on the contributions of Jenny Reardon, Karen Barad, and Banu Subramaniam to feminist approaches to STEM pedagogy, this panel invites papers addressing how feminist STS can move STEM graduates toward greater engagement with social justice, as well as deep collaboration with social sciences and humanities. What sort of curricular changes could lead to a transformation of STEM research and the diversity of researchers conducting it? How can STS scholars use pedagogy to empower STEM researchers to be agents of social transformation even in the face of anti-science discourse, and anti-women, racist, anti-trans and anti-LGBTQ cultural politics?

Contact: kavora@ucdavis.edu

Keywords: feminist, curriculum, objectivity, situated knowledge, social justice

Categories: Gender/Sexuality/Feminist STS

STS and Social Justice/Social Movement

Race/Racialization/Indigeneity

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