Programme

(T033)
Who is in, who is out? Exploring collectives in health research
Location 123
Date and Start Time 01 September, 2016 at 09:00
Sessions 2

Convenors

  • Elise Paradis (University of Toronto) email
  • Mathieu Albert (University of Toronto) email

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Short Abstract

This track will explore the different manifestations of the collective in academic health research (incl. interdisciplinarity, private/public partnerships, community-based participatory research, etc.) and their impact on patterns of inclusion and exclusion of historically marginalized communities.

Long Abstract

The scientific landscape is currently experiencing major transformations. Governments, funding bodies and universities are redrawing knowledge production practices to align with ideals of collective practice that bring together the disciplines, researchers and research participants, as well as private and public organizations. This track will explore the impact of these major transformations of "collectives" in health research and their role in transforming relationships among stakeholders in the research enterprise: How are interdisciplinary policies changing science and knowledge production? How is the involvement of participants in research transforming practices and outcomes, as well as redefining what we mean by "good" research? How is the greater involvement of industry, governments and private enterprise shaping the types of questions that are asked by researchers? Whose interests guide the research process? Who evaluates what constitutes "good" research? In sum, this track will seek to answer key questions of science policy: Who is in, who is out in science and knowledge production today? Who are the actors at the center and at the periphery? Are we witnessing the redefinition of scientific legitimacy? If so, in whose favor?

This track is closed to new paper proposals.

Papers

University-industry commercial collectives? The shifting meaning of 'responsibility' in biomedical research

Authors: Matthew Herder (Dalhousie University)  email
Kelly Holloway (St. Michael's Hospital)  email

Short Abstract

Interviews with health researchers at a Canadian university reveal an appetite for sustained university-industry collectives. Participants articulated a ‘responsibility’ to commercialize research; we query the implications for what/how research is pursued and researchers’ critical thinking capacity.

Long Abstract

Through much of the twentieth century, academic scientists were vocal participants in debates on the merits of commercializing university-based research. As governments and academic institutions increasingly embraced the importance of commercializing research scientists generally receded from that active role. We seek to relocate scientists' contemporary understanding of the role of academic science in this commercially oriented environment. We present findings based on 30 semi-structured interviews with health researchers from different career stages at a medium-sized university in Canada about patenting, presenting at conferences, creating a company, applying for funding and interacting with industry. In general, participants indicated that commercialization is a normal and mundane aspect of university research. They identify tensions in the shift to more commercialized health research, but stress that it is beyond their control. There was a consensus among most participants that commercialization is the only way to bring innovations in health research to patients; further, it was a responsibility. Much of the work in STS has not been able to deal with how different structural features of the economy have accommodated and paid for different forms of scientific research. We reflect on the dialectic between the political apparatuses of the Knowledge Economy that have worked to propagate and 'normalize' commercialization and the lack of debate about this context amongst the people who are 'doing' science. We outline the implications of health researchers' stated responsibility to commercialize for what and how research is pursued as well as researchers' own critical thinking capacity around commercialization.

Exclusion through evaluation: Social scientists working in faculties of medicine

Authors: Mathieu Albert (University of Toronto)  email
Elise Paradis (University of Toronto)  email

Short Abstract

While Canadian faculties of medicine promote interdisciplinarity, they predominantly assess social scientists and humanities scholars (SSH) with criteria suited for clinical research. This misalignment create frustration among SSH and have the effect of marginalising them.

Long Abstract

This paper explores social scientists' and humanities (SSH) scholars' integration within the academic medical research environment. Two key questions guided our investigation: How do SSH navigate their career within an epistemic and evaluative culture that may be inconsistent with their own? What strategies do they use to gain legitimacy? The study builds on three concepts: decoupling, doxa, and epistemic habitus. Twenty-nine semi-structured interviews were conducted with SSH scholars working in 11 faculties of medicine across Canada. For most of our participants, moving into medicine has been a challenging experience, as their research practices and views of academic excellence collided with those of medicine. In order to achieve legitimacy more than half of our participants altered their research practices. This resulted in a dissonance between their internalized appreciation of academic excellence and their new, altered, research practices. Only six participants experienced no form of challenge or dissonance after moving into medicine, while three decided to break with their social science and humanities past and make the medical research community their new home. Our findings suggest scope conditions as a useful refinement to Lamont and colleagues' (2006; 2009) concept of cognitive contextualization. Cognitive contextualization refers to the process of suspending one's methodological preference within an interdisciplinary evaluation context in order to adequately assess research endeavors coming from various other disciplines. As we show in this paper, as faculties of medicine in Canada are dominated by an all-pervading biomedical worldview, they may not be conducive to such cognitive contextualization.

Oncology Research - Looking for the core-set

Authors: Alexandre Hannud Abdo (LISIS - INRA)  email
Alberto Cambrosio (McGill University)  email
Jean-Philippe Cointet  email

Short Abstract

We provide an analytical description of the network of actors, drugs and institutions involved in the field of oncology by resorting to quantitative tools in association with a qualitative investigation, in order to characterize the heterogeneous core-set that drives the field.

Long Abstract

In the last four decades, oncology has shifted from a small, marginal domain within biomedicine to one of the largest, most central and successful. It is now second only to cardiovascular medicine in terms of practitioners, research activities, biopharmaceutical investment and market size. Oncology has

pioneered the most innovative recent approaches to translational research. In spite of its staggering expansion, participants report that a relatively small number of oncologists appear to define the international research and treatment agenda, with unknown consequences for medicine and human health. Field investigations show that oncology research is rapidly switching from one hot topic to another at an increasing pace. In this paper we seek to unveil this dynamics

through an empirical quantitative analysis of scientific publications. We show how research topics are synchronized worldwide. Most importantly, we identify the key entities driving this global dynamics through the analysis of the heterogeneous network consisting of research teams and collaborative networks, the laboratory and clinical technologies employed, the entities (such as tissues, cells, genes, proteins, and biomarkers) they coproduce, and the changing landscape of institutions that host them.

Knowing how to talk to medical doctors in a 'professional way': practices of in- and exclusion in elderly participation in health collectives

Authors: Lieke Oldenhof (Erasmus University Rotterdam)  email
Rik Wehrens (Erasmus University)  email

Short Abstract

This paper examines elderly participation in a Dutch health collective. We explore how frail elderly are being socialized into participatory citizens and what consequences this has for elderly people (who’s ‘in’ and who’s ‘out’) and the reconfiguration of medical expertise.

Long Abstract

This paper examines a Dutch health collective that aims to connect medical researchers and elderly to better align research to the needs of frail elderly. A core theme is to stimulate elderly patients to participate in the articulation and evaluation of research. We explore how frail elderly are being socialized into participatory citizens and what consequences this has for elderly people (who's 'in' and who's 'out') and the reconfiguration of medical expertise. We used document analysis and interviews with frail elderly and their organizational representatives, doctors, and project leaders. We draw several conclusions that link to this panel (T033). First, despite ideals of democratic participation, practices of in- and exclusion are pervasive. Especially academically and verbally 'able' elderly ('the chattering classes') initially take centre stage, whereas elderly with underprivileged social backgrounds feel less inclined to participate or are discouraged during the process of participation. Second, socialization of the 'less able' elderly does take place via coaching, guidelines and reflective meetings with the aim of including the emic perspective of the frail elderly. This creates tensions however: while it shapes elderly people into 'socially acceptable' participants in the eyes of the medical world, it reduces the particularities of the original elderly perspective. Third, the redefinition of scientific knowledge -from strictly biomedical to pluralistic repertoires of knowledge- is incremental and limited in nature due to existing organizational and financial structures. This study provides valuable insights into the pragmatic participatory balancing act that comes with translating lofty policy aims into mundane practices.

The history of orphan drugs and the development of a collective of rare diseases

Author: Koichi Mikami (Keio University)  email

Short Abstract

This paper engages the history of orphan drugs, and based on its analysis, I demonstrate the work of some main actors, who gradually formed what can be recognized as ‘a collective of rare diseases,’ and discuss how this collective made rare diseases an important public health issue in our society.

Long Abstract

Patients' participation in biomedical research is a topic that has attracted attention of some social scientists, and research on rare diseases presents the significance of such participation. However, it was only in the last decade or so that rare diseases became recognized as an important public health issue. This is not to suggest that rare diseases had not been studied in medicine. On the contrary, medicine has long-standing interest in rare cases of disease since the time of William Harvey. It was not the lack of medical interest but that of commercial interest that those living with rare diseases had long suffered from.

Carefully examining the history of orphan drugs, this paper demonstrates how they changed their fate through their interactions with others - including medical researchers policymakers, government officers and pharmaceutical and biotechnology companies - and turned their problem of 'being rare' into an attractive opportunity for mutually beneficial partnership.

Following the recent discussion about the role of 'collectives' in biomedicine to produce conventions, such as recommendations and guidelines, which substitute the authority of individual clinicians, I argue that the interactions of the actors resulted in formation of 'a collective of rare diseases.' This collective serves to set out what can and should be done locally on rare diseases, not through production of recommendations and guidelines, but through sharing of the etiquette in addressing issues of rare diseases by recommendations and guidelines. In doing so, the collective has also secured patients a seat in research and policymaking concerning rare diseases.

Center and periphery in the production of knowledge in human genetics - view from Brazil

Author: Mariana Toledo Ferreira (Universidade de São Paulo)  email

Short Abstract

The presentation aims to discuss the integration of Brazilian research on human and medical genetics in the global context, analyzing processes of international division of scientific labor among Brazilian laboratories, accounting for it through the analytical framework of center/periphery dynamics.

Long Abstract

The presentation aims to discuss the integration of Brazilian research on human and medical genetics in the global context, analyzing processes of international division of scientific labor among Brazilian laboratories, accounting for it through the analytical framework of center/periphery dynamics. In parallel, I intend to analyze the influence of the international circulation of ideas and researchers - and the growing internationalization of higher education - in the careers of Brazilian human geneticists, upon their return to the country after a period abroad. To look at the division of scientific labor as well as at knowledge circulation in terms of center and periphery is to take into account the assumption that scientific production is unevenly divided between different regions around the world. Departing from the analysis of the institutionalization of genetics research in Brazil, one can identify strategies by researchers aimed at enabling them to access international networks, from the "choice" to work with tropical organisms (for example, species of fruit flies that do not exist in temperate climates), or dealing with isolated human populations, as is the case through the genetic study of indigenous peoples. This - conditioned - decision has enabled the production of original data without the need to compete directly with international research centers, using "comparative advantages" provided by geographical location. Such a "subordinate integration" (Kreimer, 2006) is transformed and reenacted in contemporary human genetics laboratories, the focus of the proposed presentation.

Power: statisticians, authority and the genetics of common complex diseases

Author: Catherine Heeney (University of Edinburgh)  email

Short Abstract

Lack of replication of gene/phenotype associations in the early 2000s threatened funding for research into common complex diseases. Frustration with existing approaches coupled with technological optimism opened the door to a different type of statistical expert to enter the genetics community.

Long Abstract

2007 was considered the year of the Genome Wide Association Study (GWAS). This paper considers how frustration with both the candidate gene approach and family linkage studies drew a new type of statistician into the field of genetics and common complex disorders. Epidemiologists trained in looking at predisposing factors for disease in populations, were key in providing solutions for some of the difficult problems being identified by scientists in the field. The Wellcome Trust Case Control Consortium (WTCCC) which published a highly influential GWA Study in 2007 will be used as an empirical focus to trace key epistemic debates. Providing the statistical authority or power calculations to demand funding for large sample sizes to look for genes of small effect, was one part of the role of epidemiologists. However, in order to ensure the conditions for GWAS, this type of statistician also had a number of other maintenance tasks. These included convincing statisticians in already in the field of genetics that they had the tools to deal with the various types of bias that were presumed to exist in a population wide study and shoring up the gaps in performance of microarray chip technologies. Drawing on ANT, scientific literature and interviews with key players, it is argued that in the WTCCC assemblage, scientific authority ultimately rested on any number of alliances between technologies, funders and scientists but central to all of these was that between epidemiologists and geneticists.

Brazilian and Chilean psychiatric reforms and management for freedom

Author: Jimena Carrasco (Universidade Austral do Chile)  email

Short Abstract

Since the middle of the 20th century, a series of movements contesting traditional psychiatry. We explore actions of the movement regarding its political aspects, to analyse elements of the psychiatric reform processes in Brazil and Chile and discuss the concept of freedom in these practices.

Long Abstract

Since the middle of the 20th century, a series of movements contesting traditional psychiatry have come into being in many European and American countries. These movements usually undertake an essentially political analysis, questioning the asylum, as well as the asymmetry of power relations.

These processes are usually celebrated as true "revolutions" that liberated "madness" from the shackles of old psychiatry. There is an abundance of great historical narratives in an almost epic or hagiographic style.

It is not our objective to question the general guideline of these movements, but to analyse their specific devices in relation to the implied modes of government according to Foucault and Rose concepts. In this way we hope to support more precise actions of the movement regarding its political aspects, especially given the similarities between some of their practices and those present in certain liberal practices. To achieve this objective, we will first study the concept of governmentality, introduced by Foucault in the end of the 70s, with special emphasis on the techniques of liberal governments. This concept allows us to understand the transformation of the ways of "conduct of conduct" of those considered to be mentally ill, since the times of old psychiatry until the reformist modes, in a more direct way. Then we will use this approach to analyse certain elements of the psychiatric reform processes in Brazil and Chile. In the conclusion we will discuss the concept of freedom in these practices, opening the space to discuss new formulations.

This track is closed to new paper proposals.