Biomedical Knowledge Production Research Articles

Patient-led research and displacements of biomedical knowledge production, distribution, and consumption.

Patient and Public Involvement in Research (PPIR) has become an increasingly prevalent and integral part of biomedical research. In this paper, we focus on patient-led research, taking as our case the construction of new biomedical knowledge regarding the rare disease ADNP syndrome. Specifically, we seek to understand how concepts of experiential knowledge and lay expertise become integral to rather than separate from scientific expertise. In the case of ADNP, the parent-led research "mimes" biomedical knowledge practices in a way that, on the one hand, enhances the legitimacy of science and scientific expertise, and on the other displaces and transforms science by the fact that other knowledge agents (patients, next-of-kin) enter these practices.

Pox and Proximities

This article conceptualizes Iraq's medical diplomatic missions as inter-Asian linkages that rested on solidarity movements, professional networks, and the commitments of medical experts. It traces the machinations of Iraq's medical diplomacy, specifically the agendas and processes of advancing health care as humanitarian aid at a time when social unrest and outbreaks of infectious diseases led to mass inoculation and biosurveillance programs supported by regional and international medical missions. The emergence of semi-trained inoculators coupled with efforts to expand medical education faculties prompted the increase of medical labor production for both domestic and diplomatic purposes. Iraq's Cold War medical diplomacy was prismatic, multilateral and multidirectional. The dispensation and reception of biological protection, scientific technologies, and medical labor transformed Iraq into a site of biomedical knowledge production.

Decision-making as discovery: Vetting clinical research in a leading precision oncology service.

Based on fieldwork carried out at the Early Drug Development Service of a world-leading cancer institution, our study sheds lights on decision-making processes at the stage where decisions are made about which clinical trial to pursue and thus which experimental drugs will feed the growing pipeline of molecularly guided therapies and therapeutic strategies available to treating physicians. The paper shows how such collective decision-making practices by a translational research unit employ formal tools and ad hoc valuation strategies that interweave technical-scientific matters of concern with patient-oriented clinical ones, as part of the institutional assetization of biomedical knowledge production. In the process, decision-making practices in part define the conditions of possibility for the provision of care in what is increasingly becoming a 'clinic of variants.' They do so by reconfiguring on an evolving basis the socio-material ecosystem through which precision oncology is enacted as a rapidly evolving assemblage of patients, physicians, research and support staff, protocols, molecular markers, drugs and administrative components.

For the Common Good: Philosophical Foundations of Research Ethics by Alex John London

Written in response to what he recognizes as the problematic philosophical underpinnings of "orthodox research ethics," Alex John London's For the Common Good reimagines what is called for in any effort to create a better system of oversight and regulation in biomedical research. London weaves a common thread - justice - through this historical and critical account of the practice of research ethics and its organization of stakeholders, institutions and regulations. By introducing the idea of "a common good" London reframes the narrative and responsibilities of the research ethics field to demonstrate that scientific research and regard for the rights and welfare of individuals are not mutually exclusive. This impressive monograph encourages its readers to push past the limitations of traditional research ethics to consider the context in which the discipline is embedded. That is, rather than settling for analysis at the level of researchers and research participants alone, London encourages us to expand our inquiry to encompass a wider array of stakeholders who co-labor in the social undertaking of biomedical knowledge production. London accomplishes the difficult task of upstream analysis - turning his attention to the conditions and assumptions which create ethical dilemmas rather than applying a retrospective ethical salve to injuries near-guaranteed by a broken system. As opposed to the limited domain of orthodox research ethics (researchers, participants, and the institutional bodies which regulate interaction between the two) London also considers the role and contributions of affected communities, pharmaceutical firms, philanthropic organizations, and journal editors among others.

Embedded versus translational research: science-based innovation in biomedical product development

This article examines models of science-based innovation, embedded research and translational research in development of biomedical devices. While the applicability of linear of models of innovation in product develop have been widely questioned, studies have yet to explain how science-based biomedical knowledge production is reduced to practice in development of new devices. To understand how this occurs I investigated concepts of science-based innovation, embedded research and translational research in the context of commercial product development in the powered prosthetic arm industry from 1945 to 2020. I found that development of commercial powered prosthetic arms was strongly influenced by scientific research, with a majority of cases involving the originating researcher contributing to first reduction to practice in new commercial products. Instead of integrated knowledge translation practices, embedded research followed university research in many of the cases. The focus on a biomedical engineering industry limits the generalizability of the findings. Future research directions include examination of other historical and contemporary case studies, and identification of effective practices in embedding knowledge production projects in locations-of-use.

Active Coeliac: Disassembling Gluten and Coeliac Disease

This article follows the trajectories of gluten in the context of Coeliac disease as a gastrointestinal condition managed by lifelong adherence to a gluten-free diet. Oriented by the concept of gluten as an actant (Latour), I engage in an analysis of gluten as a participant in volatile relations of consumption, contact, and contamination across coeliac eating. I ask questions about biomedical knowledge production in the context of everyday dietary practices alongside two current scientific research projects developing gluten-degrading enzymes and gluten-free wheat crops. Following the new materialisms of theorists like Elizabeth A. Wilson, Jane Bennett, Donna Haraway and Bruno Latour, I approach gluten as an alloy, an impure object, a hybrid assemblage with self-organizing and disorganizing capacity, not entirely peptide chain nor food additive, not only allergen but also the chewy, sticky substance that gives pizza dough its elastic, malleable consistency. Tracing the trajectories of gluten, this article is a case study of the tricky, slippery capacity of matter to participate in processes of scientific knowledge production.

A pesquisa sobre o cancro no fim do Século XX: implicações para a organização da agenda de pesquisa no Brasil

This article describes the trajectory of cancer research in the late twentieth century, highlighting the main changes in the scientific paradigm that affected in the production of biomedical knowledge on the subject. The text discusses the emergence of genome sequencing programs in the 1990s, internationally, and in the Brazilian case, analyzes the country’s responses to the development of the so-called “Molecular Biology of Cancer” in the state of Sao Paulo. The objective of the article is to reveal the instruments adopted by the scientific and technological policies in the country, and specifically in the state of Sao Paulo, in order to promote a scientific field in the regional plan.

Entanglements in Health and Well-being: Working with Model Organisms in Biomedicine and Bioscience.

Drawing on collaborative ethnographic fieldwork, this article explores how human health becomes entangled with that of model organisms in day‐to‐day biomedical science. Social science scholarship on modeling has explored either how specific models impact and shape our knowledge of human disease or how animal technicians and scientists affect laboratory animals. This article extends this relational approach by asking how embodied and institutional care practices for model organisms affect the health and well‐being of animal technicians and scientists. We focus on two interspecies bodily experiences: pathogenic exchange and stress. We then explore enrichment as a strategy for producing health and well‐being across species. We suggest that relations of care form a crucial part of biomedical knowledge production. Not only does care figure in the shaping of model organisms; care for technicians and scientists also plays a role in bioscientific knowledge production. We conclude by proposing an interspecies approach to occupational health.

Mal paraje and mala hora: remarks on the naturalistic violence towards Andean medical knowledge.

The local notions of mal paraje [bad place] and mala hora [bad time] are key to explaining many illnesses in Andean medical knowledge. Notwithstanding the relevance of these notions ethnographically, neither anthropological research nor biomedical knowledge has properly dealt with these local distinctions, and have largely relegated them to the shadows. Our aim is to examine the origin of this shortcoming of anthropological and biomedical knowledge production. Our hypothesis is that such shortcoming is related to the implicit use of certain naturalistic theoretical presuppositions, both from the point of view of social sciences and from the point of view of biomedical research, producing symbolic and epistemic violence against Andean medical knowledge which we call naturalistic violence. In methodological terms we examine ethnographic data from the Aymara community of Camiña (Tarapacá, Chile) and the literature produced on this topic. We focus on the notions of mal paraje and mala hora using the content analysis technique. We conclude that the main naturalistic obstacles include the treatment received by territorial entities, the relationships established among these entities and human beings (reciprocity), and the conceptions of space/time present in the diagnosis of a disease.

Consuming DNA: The Good Citizen in the Age of Precision Medicine

The convergence of increasingly efficient high-throughput genetic sequencing technology and ubiquitous Internet use has fueled the proliferation of companies that provide direct-to-consumer (DTC) personal genetic information. The emergence of consumer genetics reflects several shifts in the governance of genetic testing and management of human genetic data. This article discusses DTC genetics as a case study of neoliberalism and contemporary transformations in medicine that construe disease and its management through economic rationalities. At stake are shifts in subjectivities from “patient” to “consumer” and the meaning of being a “good citizen” in the context of precision medicine. Engaging concepts of biopower, biosociality, and biovalue in the public consumption of genetic information, this article analyzes DTC genetics and its effect on social connection, identity, and modes of participation in the production of biomedical knowledge and the management of health and risk.

Directing the senses in the contemporary orientations to cancer disease control: Debating symptom research

This paper discusses ongoing changes in orientations to cancer disease control in the Global North, particularly health promoter attempts to identify the early cancerous body. The paper suggests that the emphasis on early diagnosis of cancer aligns ideas on a symptomatic management of the public with a process in which ‘what counts as cancer symptoms’ is steadily being subdivided, classified and expanded. This alignment, the paper suggests, is an example of how biomedicine potentially extends its boundaries into everyday forms of embodied, social life by changing the social and moral value placed on bodily sensations. Also, the paper echoes ongoing conversations in medical anthropology on symptom experiences; suggesting that symptom experiences may be a suitable analytic axiom for exploring the relationship between biomedical knowledge production and embodied experience. It is suggested that an anthropology of sensations is a useful analytical framework for such explorations.

Expert Perspectives on Mesoamerican Nephropathy (MeN): Examining the Production of Biomedical Knowledge about a Contested Epidemic

Expert Perspectives on Mesoamerican Nephropathy (MeN): Examining the Production of Biomedical Knowledge about a Contested Epidemic

Introduction to Attachments to War: Violence and the Production of Biomedical Knowledge in Twenty-first Century America

This is an excerpt from Jennifer Terry's book, Attachments to War: Violence and the Production of Biomedical Knowledge in Twenty-first Century America, forthcoming 2017. This excerpt is copyrighted by Duke University Press.

Valuations of experimental designs in proteomic biomarker experiments and traditional randomised controlled trials

ABSTRACTThis article examines the shifting conditions for biomedical knowledge production by studying trends in the design of biomedical experiments. The basic premise of the study is that the very act of establishing a research design entails a process involving a series of valuations where different values are evoked, ordered, and displaced. In focus is the articulation and ordering of what counts as central values in research design for two kinds of biomedical treatment trials, namely the traditional randomised controlled trial (RCT) and the emerging new form of biomarker trials used to assess biomarker/treatment combinations (BTTs). The empirical material consists of textbooks (RCTs) and journal articles (BTTs). We ask how these materials articulate the various scientific, medical, and economic values at play. Among the differences uncovered are a difference in relation to what counts as ethical in relation to prior knowledge, differences in the flexibility in design as well as the valuation of the risk for false positives and false negatives. More broadly, the study shows how textual accounts of different ways of producing knowledge are linked to partly different valuations of ethics, flexibility, and risk as part of establishing the research design of biomedical experiments.

Clinical Trials Abroad: The Marketable Ethics, Weak Protections and Vulnerable Subjects of EU Law

AbstractThis chapter explores how the EU is a largely overlooked exporter of normative power through its facilitation and use of clinical trials data produced abroad for the marketing of safe pharmaceuticals at home; a move that helps to foster the growing resort to pharmaceuticals as a fix for public health problems. This is made possible by the EU’s (de)selection of international ethical frameworks in preference to the international technical standards it co-authors with other global regulators. Clinical trials abroad underscore how ethics are contingent and revisable in light of market needs, producing weak protections for the vulnerable subjects of EU law. I argue that these components and effects of the regime are ultimately about that which undergirds, shapes and directs regulatory design. That is, I point to the use, infiltration, perpetuation and extension of market-oriented ideas, values and rationalities into formally non-market domains like biomedical knowledge production and public health. I explain how these are central to efforts at producing and legitimating the EU, its related imagined socio-political order based on a more innovative, profitable and competitive pharmaceutical sector in order to foster economic growth, jobs and prosperity, and with them the project of European integration. ‘Bioethics as risk’ is highlighted as a way to reshape and redirect the regulatory regime in ways that are more consistent with the spirit and letter of the ethical standards (and through them the human rights) the EU claims to uphold.

The Nazi Symbiosis: Human Genetics and Politics in the Third Reich (review)

Reviewed by: The Nazi Symbiosis: Human Genetics and Politics in the Third Reich Amy Carney The Nazi Symbiosis: Human Genetics and Politics in the Third Reich. By Sheila Faith Weiss. Chicago: University of Chicago Press, 2010. Pp. 392. Cloth $45.00. ISBN 978-0226891767. For nearly three decades, historians of science and medicine, as well as of modern Germany, have examined science under National Socialism. One of the most prominent subjects has been biomedical science, particularly genetics and eugenics. With this work, Sheila Faith Weiss once again contributes to the field, this time by examining the “symbiotic” relationship between German scientists and the Nazi state, a relationship which she defines as a “Faustian bargain.” Weiss analyzes how and why this bargain came to be and explores its evolution during the Third Reich. To assess the relationship between science and politics, Weiss chooses four examples to demonstrate the circumstances under which such “bargains” were sealed. The first two cases examine alliances between the regime and two branches of the Kaiser Wilhelm Society: the Institute for Anthropology and the Institute for Psychiatry. These institutes were important centers for investigating human heredity, and Weiss demonstrates how the research carried out by many of their personnel provided scientific legitimacy for the regime’s racial policies. She additionally appraises the morally problematic research that each institute engaged in during World War II, specifically in connection with the euthanasia program as well as the experiments conducted in the extermination and concentration camps. While these two examples focus on the production of biomedical knowledge, the other two cases evaluate its dissemination. The third case explores how scientists legitimized racial science by holding public lectures and participating in national and international conferences. Conversely, whereas the first three cases highlight the contributions by academics, the final example looks at the ways in which secondary-school [End Page 430] biology teachers sought to educate their students about racial science. Although these teachers were not as prominent as the scientists, they were better able to disseminate the racial views promoted by the state and supported by the scientific elite because they routinely interacted with many students. By employing these specific cases to explain how racial science was legitimized and popularized, Weiss tries to achieve a number of objectives. One goal is to present contextualized history, which she achieves in two ways. The first is historical: for each case, she provides background information that enables the reader to understand the continuities in German science from the Weimar Republic through the Nazi period. She argues that the existence of a vibrant scientific community before 1933 was a necessary precursor to the later symbiosis. The second way is geographical: Weiss outlines the connections that existed between German scientists and their counterparts in other countries, especially the United States. All of this strongly suggests that German scientists were well-regarded professionals engaged in legitimate scientific activity—and were not, as is popularly assumed, mere quacks promoting pseudoscience. Weiss wants her study to be a resource for scholars, as well as for an interested lay audience. In her acknowledgements, she explains that her motivation to write the book was the absence of an accessible one on this topic for upper-level undergraduate courses. This well written study helps elucidate the relationship between science and politics in the Third Reich and has enough details to satisfy scholars. At the same time, it provides an insightful narrative that a lay audience will find accessible and that will serve as a useful learning aid for students. Amy Carney Penn State University–Erie Copyright © 2012 German Studies Association

Blinding Authority

In this article, the authors present an ethnography of biomedical knowledge production and science collaboration when they take place in developing country contexts. The authors focus on the arrival of international clinical trials to Sri Lanka and provide analysis of what was described as one of the first multisited trials in the country, a pharmaceutical company sponsored, phase 2, randomized, double-blind, placebo controlled trial carried out between 2009 and 2010. Using interviews with those who conducted the trial and six months of participant observation at the trial hospital, the authors describe the work that goes on to perform trials according to international standards. The article describes what happens when a randomized controlled trial encounters existing epistemic virtues and documents the impacts on ideas of authority, expertise and doctor–patient relationships found in Sri Lankan medicine.

Notes on Contributors

Notes on Contributors

Umwelt, Gene, Gender: Multiplikationseffekte im Umfeld der Genomforschung1

This case study on biomedical knowledge production investigates the notion of environment, genes and gender and their productivity in the field of environmental health. Asking for the relations between genomics and risk factor epidemiology, II follow the circulation of the categories 'gender'/'sex' and 'ethnicity'/'race' in the emerging field of 'environmental genomics'. Can the inclusion of gender challenge biomedicine or does biomedicine consolidate biological concepts of 'sex'? II will argue that these 'population categories' are reconfigured in the process of epidemiological investigations into causal determinants of disease. Environmental health research is examined as one of the sites where these biosocial negotiations of body concepts occur in a co-production between genomic data and contextual inscriptions.

Thug Realism: Inhabiting Fantasy in Urban Tanzania

One of more compelling developments in contemporary sociocultural anthropology is its increasing attention to the imagination. From most spectacular fantasies to most mundane reveries, imagining world as it is and as it might be seems to be a rapidly expanding form of activity. Such imaginative acts are now held to be relevant-indeed necessary-not only to such predictable endeavors as consumption and leisure but to fields as diverse as construction of civil society (Comaroff and Comaroff 1999a), production of biomedical knowledge (Martin 1998), and nuclear proliferation (Gusterson 1999). This move towards all things has further been characterized by an important kind of reflexivity, as exploring complexities of imagined requires exercise of imagination. Indeed, even a cursory review of current ethnographic observations might lead us to conclude that nothing is now unimaginable. In this article I will examine imaginative implications of contemporary Tanzanian economy and society for a select, but by no means peripheral, group of young men living and working, mostly in barbershops, but also in other businesses in city of Arusha, one of largest cities in Tanzania. The expansion of this informal sector in urban Tanzania and diverse modes of imagining that characterize it are clearly emergent under conditions of what has been described as globalization, and it is intersection of these rubrics-the imaginary and the global-that I intend to explore. I would suggest as a point of theoretical departure that analytical coupling of to processes of globalization has often obscured ways that imaginative acts are in fact materially grounded in social activities. While calls for localization and attention to lived experience have been legion, too often act of imagining is unmoored from specific forms, times, and places through which persons project their possible lives. Thus, it is possible for Abu-Lughod to insist that viewers of Egyptian soap opera are part of same cultural worlds we inhabit-worlds of mass media, consumption, and dispersed communities of imagination (Abu-Lughod 1997:128). Surely forms of global connectivity exemplified by soap opera establish, or at