Day 1 Session 2: Production of Knowledge (Discussant: Rik Wehrens) 

Addressing Epistemicide to Achieve Health Equity in American Indian Communities: Applications for Global Health Research

Myra Parker [1], Maya Magarati [2] and Bonnie Duran [1]

1. Center for the Study of Health and Risk Behavior, Department of Psychiatry and Behavioral Sciences, University of Washington
2. Indigenous Wellness Research Institute, School of Social Work, University of Washington


American Indian and Alaska Native (AI/AN) communities continue to experience a disproportionate level of disease burden across the United States, comparable with rates in Indigenous communities worldwide. Concurrent with the magnitude of poor health outcomes and the effects on AI/AN communities, indigenous communities in the United States continue to bear the effects of medical and research harm from ongoing mistreatment and ethics abuses by government and academic researchers. This paper situates the everyday community engagement practices on research conducted in a series of studies with AI/AN communities in the historical, social, political and epistemological context to achieve an equitable approach to alcohol research within these high-­need, stigmatized communities, and suggests updates to the community-­ based participatory research (CBPR) principles for applications in Global Health research. Along with ensuring research protocols receive Institutional Review Board review and approval at the AI/AN community level, researchers must meet community requirements for reports on research progress and obtain community input on a regular basis to formulate the study design, methodology, analysis, and dissemination of results. In the attempt to achieve both knowledge democracy and turn the tide of epistemicide, a major outcome of the community engagement process has been seeking research support for a series of joint sessions between academic researchers and AI/AN community members to review study results and plan dissemination. This paper will shed light on unique community engagement practices in research with AI/AN communities that aim for broader transformations in the politics and dynamics of research.

The Possibility of Addressing Epistemic Injustice through Engaged Research Practice: Reflections on a Menstruation Related Critical Health Project

Sharli Paphitis [1]

1. Rhodes University, South Africa


According to Fricker (2007), epistemic injustices are those which can be seen to dehumanize groups as well as individuals within those groups by delegitimizing them as ‘knowers’ – either in the eyes of society or the academy, or their own eyes - and through excluding them from taking part in the knowledge economy. Engaged research practices purport to stimulate the democratization of the knowledge production processes by being more inclusive of research participants within these processes, and in so doing to promote either testimonial justice (in which the standard and biased reception of testimony from groups or individuals which are given limited credence by hearers from dominant groups has been systematically disrupted) or hermeneutical justice (in which members of marginalised or oppressed groups are given opportunities, resources and platforms to interpret their experiences of the world for themselves and others and share these interpretations with hearers who give such interpretations credence), or both. There has been little research, particularly in a South African context, which examines questions of epistemic justice in relation to community engagement activities – either in relation to the effects within academia or in community partner organisations or sites. While it is purported that when academics and community members are involved in the co-creation of knowledge through a mutually beneficial exchange of resources and expertise, all participants are able to emerge as active stakeholders in the knowledge production process, little research has been done on how community partners in particular experience these processes from an epistemological perspective. Does the proposed process of repositioning research participants in community engagement praxis allows for a new power dynamic to emerge in research such that all parties genuinely feel like they share equal responsibility for determining the processes and outcomes of the knowledge production process? Do such activities allow for an epistemological shift away from the traditional knowledge construction paradigm which “characterises traditional scholarship… where knowledge… [is] the preserve of universities” (Magaiza 2014: 68) to one in which the democratization of knowledge is prioritized? Does such an epistemological shift in the knowledge construction paradigm extend beyond simply the knowledge construction process to interpersonal relationships between academics – who no longer see themselves as simply detached and credentialed experts who generate knowledge – and community members – who are simply unskilled recipients of knowledge produced by those experts? In answering these questions I will draw on my own experiences working in a menstruation related engaged research critical health project, not only to discuss the complexities of whether the amelioration of epistemic injustices are being served through community engagement activities, but to make recommendations for improving community engagement practices such that they might better serve their purported aims.

Contested legitimacy of regenerative vs. established biomedicine: Practices of engagement among immunostimulant-users for treating autoimmunity in contemporary Brazil

Márcio Vilar [1]

1. University of Leipzig


From an applied and theoretical anthropological perspective, I explore the following question: To what extent do the forms of engagement of people with autoimmune diseases in supporting non-authorized immunostimulant therapies in Brazil impact the established biomedical approach of utilising palliative immunosuppressive drugs to treat autoimmunity?

By addressing aspects of everyday politics and forms of engagement of medical doctors and patients with autoimmune diseases (such as arthritis, lupus, multiple sclerosis, cancer etc.) in their search for cure or relief, I describe how some of them adopt and promote immunostimulant drugs that are still not fully legalized and that tend to be disqualified by established biomedical authorities. To do this, I report two regulatory case studies that involve different immunostimulant pharmaceuticals associated with non-authorised regenerative medicine: the ‘vacina anti-brucélica’ (anti-brucellic vaccine), and; the ‘fosfoetanolamina sintética’ (synthetic phosphoethanolamine). Both are largely used by patients against rheumatoid arthritis and cancer, respectively, and both refuse the conventional approach of immunosuppression in order to properly function.

Using a methodology based on multi-sited fieldwork (incorporating autoethnography and netnography), I follow these pharmaceuticals in order to re-trace associations and map the main relations that have constituted them as biotechnological innovative agents and, coextensively, as objects of judicial dispute and regulation. As part of it, I focus on the efforts of immunostimulant-users to overcome the legal constraints imposed to these two immunostimulant therapies, and highlight a set of actors (medical doctors, patients, governmental agents, entrepreneurs, activists etc.) engaged in the regulation of immunity. Analytically, I seek to understand how scientific innovation, established biomedicine and informal health care co-exist and interact in contemporary Brazil, and how their relations are mediated by legal institutions, for instance, through a judicialization of biopolitics.

By conceptualizing the bionetworking activities of immunostimulant-users in terms of life assemblages, I provide an anthropological reflection from a Global South perspective on their practices of engagement as acts of co-regulation of the immune system that conflict with the globally hegemonic therapeutic model of immunosuppression.

Legitimating the individual vis-à-vis the generalizable: the unstoppable growth of direct to consumer stem cell therapies

Saheli Datta [1]

1. King's College London, Department of Political Economy and King’s India Institute


The literature on the ethical, legal and social issues surrounding global stem cell tourism is extensive with an overwhelming focus on ‘supply side’ analysis and sparse attention to ‘demand side’ (patient-based) needs (Salter, 2014). According to Salter, the ‘supply side’ comprises of key factors of production enabling the supply of stem cell based knowledge like researchers, clinicians, policy-makers, regulators etc. While health consumers or patients seeking stem cell therapies comprise the ‘demand side’ (ibid). The problem is that despite huge ‘supply side’ investments in stem cell research, statistics driven western models of bio-innovation have produced few of the ‘stem cell therapies’ promised by early breakthroughs in the late 90s. At the same time, a combination of media hype and internet-savvy, information-seeking, globally mobile health consumerism has steadily amplified demand for experimental stem cell therapies that are readily accessible in countries with developing regulations like China and India. The outcome is stem cell tourism. Literature about stem cell tourism provide an exhaustive analysis of the ethical, legal and social issues of stem-cell tourism to China and India but ultimately recommend ‘supply side’ changes grounded in strengthening compliance standards in medical and scientific innovation mainly through international pressure on countries with permissive regulations to raise standards as a precondition of global collaborations. In contrast, the academic engagement with patients, patient-agency, patient choices are sparse. Thus the resulting overwhelmingly ‘supply-side’ discourse, constructed by the elite epistemic communities who contribute to respected peer-reviewed literature, not only assumes (a) a paternalistic attitude that assumes patients’ bodies as lacking agency to make rational health choices without state-intervention, but also (b) provides a distorted analytic of the ‘whole picture’– as it fails to consider the key dynamic relationship between supply-demand, supplier-consumer, clinical researcher-patient and the impact of internet and globalisation. On the other hand, findings of a handful of studies into the behaviour of stem cell tourists show that patients increasingly ii) draw trust from ‘experiential’ knowledge of stem cell treatments shared via social networks (mostly web-based) at the same time they reference repositories of ‘expert’ knowledge perceived as impartial e.g. the ISSCR guidelines, and iii) view the lack of agency suggested by bioethical positions like ‘trading on hope’ as ‘paternalistic’ and often reject expert knowledge in favour of the ‘experiential.’ Thus literature, however well-intentioned has little impact on patient behaviour. This paper draws on social media interactions of patients at the heart of the stem cell patient movements and individual patient interviews conducted in India, China and UK (from 2013 to 2015) to understand how epistemic communities’ overwhelming engagement with the ‘supply side’ not only marginalises the agency of the ‘demand side’ but in so doing reflects a ‘disconnect’ between epistemic communities and the ground realities that is unlikely to produce meaningful change.