Tag Archives: biomedicine

Epistemic pluralization and health activist groups

In this paper we present some of the main ideas and conclusions of our last two research projects, which have analysed in depth several case studies around the increasing implication of health activist groups in the production of biomedical knowledge. Using some examples from our own research, we argue that the incorporation of experiential and lay knowledges of patients is transforming biomedical sciences in different ways, producing what we term “epistemic pluralization”.

We are currently developing a research cluster focused on health activism and public participation, particularly on forms of generating knowledge and care practices from a feminist intersectional perspective. This work covers our previous project, Visions and Versions of Medical Biotechnologies (2012-2016), and the current one, Feminist Epistemologies and Health Activisms (2017-2019), both funded by the Spanish Public R+D Plan. Whereas the first aimed to map out networks and the circulation of knowledge among activist groups, the second one intends to emphasize how feminist knowledges and epistemologies transform biomedical practices. The current project has a more participatory approach both to promote forms of intervention and communication with health professionals and to walk side-by-side with collectives to generate co-operative synergies.

In the different activities and publications related to Visions and Versions of Medical Biotechnologies, we analysed the increasing importance and diversity of forms of social mobilisation around health issues by focusing on its epistemic implications: how do they transform the knowledge production and care practices in health and biomedicine? We faced that question by focusing on several case studies, primarily with trans and intersex activism in Spain, but also with other examples of how patients are increasingly intervening in the production of biomedical knowledge. In our research, we have also identified how traditional forms of scientific communication -top-down, from “experts” to “lay people”- are currently being reconfigured, through a new reappraisal of experiential knowledges which generate “hybrid” forms of knowledge that bring together personal experiences, activism and biomedical knowledge (Wehling, Viehöver and Koenen, 2015). It is in this sense that we speak of “epistemic pluralization”: as different actors and voices gain legitimacy as epistemic agents, the distinction of “expert vs. lay knowledge” blurs somewhat, or becomes more complex. Sometimes, indeed, forms of health activism become epistemic correctives identifying undone science (Hess, 2009).

Hybrid Lay-Expert Knowledges and Activist Groups

As its very name implies, the figure of the patient was traditionally constructed in modern medicine as a passive epistemic element. But patients are increasingly becoming actors in the production of biomedical knowledge. Within the social sciences two main analytical frameworks have derived from this idea: lay knowledge and lay expertise. Lay knowledge (Caron-Flinterman, Broerse and Bunders, 2005; Prior, 2003) has been used to refer to experiences, perspectives or meanings patients offer about their own illness. It also refers to their knowledge of their own body, especially the kind of practical, caring knowledge they have. Finally, it makes reference to the knowledge specifically generated by associations and support groups, as they share their experiences as “communities of practice” or as “experts in the experience” (Akrich, 2010; Rabeharisoa, 2008). Lay expertise, on the other hand, refers to processes of expertification of patients, certain individuals or groups that, in the course of their condition or illness, seek information on causes, treatment, etc. becoming, thus, a specialist, one that can “legitimately speak[ing] in the language of medical science” (Epstein, 1996: 9).

In the case studies developed by our group, we have come across both types of knowledge. Experiential knowledge becomes part of care and self-care. For instance, the knowledges that caregivers for people with Alzheimer’s have -about the previous life of the cared person, but also about the current person’s need and tastes- function collectively as forms of sustaining the person living with Alzheimer’s (Ruiz, 2015). Another example are the oral knowledges that are passed on from mothers to daughters, between female friends or through offline or online recent mother self-support groups to respond to breastfeeding issues such as mastitis treatments (Santoro and Romero-Bachiller, 2017). But experiential knowledge also becomes part of mutual self-help processes in activist groups: for example, the stories that parents of trans minors and minors with an intersex condition share about how to communicate with their children in a positive manner about stigmatised or taboo issues. We have also analysed how online forums, blogs, social networks and collective webpages, and even mobile phone group chats, are recurring sites for sharing doubts and knowledges. These sites have contributed to the recognition of such knowledges, as some have provided material for support guides for parents, giving way to not only a medical, but instead a psychosocial turn in the treatment and care of these conditions (García-Dauder, Gregori and Hurtado, 2015).

Also, very often a process of expertification of patients and relatives occurs. Informational resources on association websites are a clear example of this, as they offer accessible and understandable information, adjusted to different levels of knowledge about the condition. Expertise becomes evident as well in conferences or association meetings where medical professionals are invited: questions from the public -made up of association members or relatives- show profound insight, sometimes even discussing recently published scientific articles by specialised professionals. Thus, many association members become expert patients, especially when they are affected by less frequent pathologies, rare diseases or stigmatised conditions. In the case of both intersex and trans individuals, sometimes the medical community itself will invite them to their professional meetings -yet with varying degrees of recognition and types of participation, from experiential testimony to expert knowledge- thereby recognizing the need to learn from and with them. Some of those “expert patients” even participate in scientific journals in collective authorship articles or as co-authors with medical professionals. In some cases, health activists and expert patients have even become instructors for medical professionals on psychosocial and gender issues -as has been the case with trans and intersex activists (Ortega et al., 2018). In some other cases, this has facilitated an inversion of the subject-object order of knowledge relationships: the very “objects of knowledge” -i.e. trans and intersex collectives or activists- have become real “experts” on the “subjects of knowledge” -doctors, scientists (García-Dauder and Romero-Bachiller, 2012). These “experts on experts” are groups with a deep understanding of the scientific literature, and they critically discuss and analyse the practices of the professionals treating them, sharing all this information with other people. Sometimes they even “experiment” with their own bodies, by regulating dosages or favouring certain prescriptions over others, for example, as in the case of male trans activists who reduce their testosterone dosage or advocate for the re-incorporation of Reandron© 1000 ml -an injectable prescription dosage of testosterone- to the list of drugs that are publicly funded in Spain (Ortega et al., 2018).

A concrete experience of committed articulation and production of hybrid knowledge we recently developed was the organization of a workshop to train psychotherapists to work with intersex people. The workshop took place in September 2017 and was organised along with a Spanish congenital adrenal hyperplasia association we have been working with for years. The training was given by two team researchers along with an adult with an intersex condition, and two mothers with girls with another condition and members of the association. The training aimed to give the participants an understanding of the specific characteristics and psychological needs of living with an intersex condition. Afterwards we participated with the trained psychotherapists in the First Psychosocial Meeting of CAH -Congenital Adrenal Hyperplasia- by organising three workshops for girls, adults and mothers and fathers that addressed issues such as needs, emotions and communication. Boundaries between expert and experiential knowledge, and the premise that knowledge circulation is unidirectional and top-bottom, were both heavily questioned through these events.

Photographs taken by a team member of First Psychosocial Meeting of CAH, September 30th, 2017. Fig. 1 (top): final moment of the workshop.

Fig. 2: “Sculptures of the World of Hyperplasia”

Fig. 3: “Sculptures of the World of Hyperplasia”

Therefore, and as Wehling, Viehöver and Koenen (2015) have pointed out, we are increasingly confronted with hybrid forms of knowledge: scientific/biomedical knowledge is transformed and adapted to a patient’s own experience, a process which is both individual and collectivized through “communities of practice” (Akrich, 2010). In the collective learning process found in patient associations, shared advice and testimonies are inseparable from scientific knowledge -even in the most critically active collectives. In a similar fashion, the dissemination of accessible biomedical information to patients is increasingly impregnated with experiential knowledge -stories, testimonies and accounts from other patients. These are ultimately examples where experiential and academic knowledge work together, creating epistemic pluralised networks and developing new understandings of these conditions.

A larger porosity between scientific and “anti-scientific” knowledge can be found in some of our other research projects. In the context of childbirth, upbringing and breastfeeding, apart from the fact that there are different professional conflicts over unqualified practice -gynecologists, midwives, doulas- it is not easy to differentiate between medicalised knowledge and other “alternative”, “traditional” or “experience-based” knowledges. In focus groups of inquiry with recent mothers that we carried out in 2015, the mothers’ discourses showed there was not a unequivocal opposition between medically legitimised knowledge and “alternative” options. Mothers were involved in different forms of what we term activation of care with a multiple, juxtaposed and complex use of medical recommendations, alternative strategies, and experiences offered by friends, family, mobile phone group chats of recent mothers, or members of internet forums (Santoro and Romero-Bachiller, 2017).

Yet a hybridisation of knowledge is also produced on the “medical” side, as experiential knowledge is increasingly incorporated into scientific literature. The proliferation of qualitative methods in health research, for instance, gives renewed value to experiential narratives as evidence. Medical training given by patients is not an oddity, nor is their participation in medical conferences. Patients are not only listened to: sometimes their knowledge has been incorporated as an epistemic corrective, transforming medical practices, and helping to develop “undone science” (Hess, 2009). In the case of intersex activism, this has given way to a genuine paradigm shift, moving from a strictly biomedical paradigm to a psychosocial and human rights one, which has opened up bioethical and legal questions on medical practices (García-Dauder, Gregori and Hurtado, 2015).

On the other hand, there are also entrepreneurial actors turning their attention to the “experiential knowledge” of patients and family. Web platforms open social networks where patients and relatives can “share” their experience of “living with a condition” -such as the website Personas que [People that]. This altruistically shared information is formalised, quantified and organized by the companies managing these sites, and is then purchased by pharmaceutical companies and other bio-industries. This process introduces new agents, and the need to analyse the relationship between associations and these bioeconomic organizations (Lupton, 2013): patient experiential knowledge becomes here a commodifiable product in the bioeconomy (Pavone and Goven, 2017).

Finally, most of these knowledges are inseparable from care practices. Embodied, materialised and moving through the body, care practices are found in a concrete ensemble of relational practices: a “know-how”. For example, knowledges built, shared and mobilised by caregivers for Alzheimer’s patients become practices: practices of recognition, memory and care. Yet, from these very practices, hybrid knowledges also emerge. Knowledges that may help to provide better care (Ruiz Marcos, 2015).

Feminist health activism as epistemic corrective: Activism-based Evidence

A type of activity in activist health groups which we would like to consider in certain detail is the production of knowledge that questions medical science and dominant paradigms -their conceptualisation of etiology, prevention, diagnosis, treatments. This was specifically looked at in the project Visions and Versions of Medical Biotechnologies, where we focused on opponent groups (Callon and Rabeharisoa, 2003), such as trans activist and some intersex collectives that aim to depathologize their conditions, generating epistemic “correctives” to dominant research and pressing science to act with greater social responsibility (Wehling, Viehöver and Koenen, 2015).

The role of this trans and intersex activism groups is especially relevant in promoting shifts in paradigms and in improving scientific practice. Yet, we are not talking about “evidence based activism” (Akrich, O’Donovan and Rabeharisoa, 2015), that is, those “hybrid” forms of biomedical/experiential knowledge from which activists defend the “evidence” of their demands. Rather, what we see here is “activism based evidence”: that is, a problematization of the very evidence itself and, with it, of the very biomedical paradigm -especially when the main objective is to depathologize certain conditions.

We have also analysed the knowledge generated in the International Network for Trans Depathologization -a collective that emerged in the context of Spain which later, through different mutations, become internationalised. We have specifically focused on their production of epistemic correctives, and mostly on their critiques of the DSM-5 and CIE-10, where transexuality is still included in the catalogue of mental illnesses -although in the DSM-5 the term “disorder” has been eliminated. This critical task is complemented as well by concrete contributions, in the form of assistance protocols and alternative support procedures, such as the Best Practices Guide to Trans Health Care in the National Health System (2010) (Ortega, Romero-Bachiller and Ibáñez, 2014). A parallel process is occurring in the case of intersex organizing, where pressure from activists and support groups is causing not only a re-evaluation of the standards of care -to more patient centered ones that are based on informed consent- but also a shift to a psychosocial and human rights paradigm that is breaking down the exclusively biomedical paradigm that existed previously, which was more centered around surgeries and hormonal treatment for bodily “normalization” (García-Dauder, Gregori and Hurtado, 2015). Therefore, associations exert a mediating role between multidisciplinary approaches -biological, psychological and social ones- by pressuring science to act with greater social responsibility and by generating not only biomedical knowledges and practices, but also ethical and legal ones (Wehling, Viehöver and Koenen, 2015).

In our new project, Feminist Epistemologies and Health Activisms, which started in January 2017, we continue inquiring into this “scientific evidence” that emerges from health activism, by investigating recent cases where feminist social movements and collectives have been transforming practices and knowledges, thus contributing to more inclusive science (Epstein, 1996) and stronger objectivity (Harding, 2015). A new and interesting line of action has been seeking to recover the “lost history” of how the Women’s Health Movement -although never self-identifying itself under such name in Spain- and the LGBT movement in the 1970’s contributed to the improvement of knowledge on women’s health and bodies and on sexual diversity -thus, favouring the depenalisation of contraception (1978), homosexuality (1978), and abortion (1981) in Spanish society.

New researchers and new case studies have been incorporated into this project: the transfer of reproductive capacity through ova donation, human breast milk donation, participation in clinical trials and some other forms of what Cooper and Waldby (2015) have coined as “biolabour”. All these cases bring to the fore new questions, as they erode clear lines of demarcation between exploitative and depriving forms of participation in bioeconomies and empowering forms of participation in health associations (Santoro and Romero-Bachiller, 2017). These cases also move away from individuals acting in the bioeconomy through isolated decision-making and from empowered associations participating collectively in the production of health knowledge, to more informal and diffuse, yet also collective, spaces of interaction, knowledge production and participation. Spaces created by and generative of affects, bonds and reciprocity. Concrete attention to details in these cases becomes essential, as we find more entangled realities this way: sometimes forms of solidarity, belonging and obligation become strengthened by care bonds, some of which become articulated beyond traditional kin lines. Caring becomes enmeshed in chains of exchange which cannot be detached from bioeconomical interest, constructions of altruism, and emerging personal bonds. Affect, interest and obligation are all entangled in forms of “activating care” (Santoro and Romero-Bachiller, 2017), as we are illustrating in our current research on ova donation to fertility clinics (Lafuente, 2017) and on human breast milk donation (Romero-Bachiller and Santoro, in press). New questions are urgently emerging here about interactions of everyday life and the overflowing of strict definitions and clear cut perspectives, and they are being addressed by these cases.

They can all be considered examples of what Nancy Tuana (2006) identified as the move away from “epistemologies of ignorance” to “epistemologies of resistance”, stressing not only the role that health activism can play in making areas of ignorance visible, but also how it can produce paradigm shifts or “hidden innovations”. With this research we aim to reevaluate knowledges derived from embodied collective relational experience to open up to informal forms of sociality and solidarity as well as to the dense and complex bonds and relationship they provide.

References

Akrich, Madeleine (2010). From communities of practice to epistemic communities: health mobilizations on the internet. Sociological Research Online, 15(2): 10.

Akrich, Madeleine; O‘Donovan, Orla; Rabeharisoa, Volona (2015). The entanglement of scientific and political claims: towards a new form of patients’ activism. In P. Wehling; W. Viehöver; S. Koenen (eds.), The Public Shaping of Medical Research. London: Routledge.

Barbot, Janine (2006). How to build an “active” patient? The work of AIDS associations in France. Social science & medicine, 62(3): 538-551.

Brown, Phil (ed.) (2008). Perspectives in Medical Sociology. Long Grove: Waveland Press.

Brown, P.; Zavestoski, S.; McCormick, S.; Mayer, B.; Morello-Frosch, R.; Gasior Altman, R. (2004). Embodied health movements: new approaches to social movements in health. Sociology of Health & Illness, 26(1): 50–80.

Callon, Michel; Rabeharisoa, Volona (2003). Research “in the wild” and the shaping of new social identities. Technology in Society, 25: 193-204.

Caron-Flinterman, J. Francisca; Broerse, Jacqueline; Bunders, Joske (2005). The experiential knowledge of patients: a new resource for biomedical research? Social Science & Medicine, 60(11): 2575-2584.

Cooper, Melinda; Waldby, Catherine (2014). Clinical Labor: Tissue Donors and Research Subjects in the Global Bioeconomy. London: Duke UP.

Epstein, Steven (1996). Impure Science. AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.

García-Dauder, S.; Romero-Bachiller, Carmen (2012). Los desplazamientos políticos de las categorías médicas. In Pérez Sedeño, Eulalia; Ibáñez, Rebeca (eds.). Cuerpos y diferencias (213- 240). Madrid: Plaza y Valdés.

García-Dauder, S.; Gregori, Nuria; Hurtado, Inmaculada (2015). Usos de lo psicosocial en la investigación y tratamiento de las intersexualidades/DSD. Universitas psychologica, 14(5): 1649-1666.

Harding, Sandra (2015). Objectivity and diversity: Another logic of scientific research. Chicago: University of Chicago Press.

Hess, David (2009). The potentials and limitations of civil society research: Getting undone science done. Sociological Inquiry, 79(3): 306-327.

Lafuente, Sara (2017). Egg Donation in the Making: Gender, Selection and (In)Visibilities in the Spanish Bioeconomy of Reproduction.In V. Pavone; J. Goven (eds.), Bioeconomies: Life, Technology and Capital in the 21st century. London: Palgrave Macmillan.

Lupton, Deborah (2013). The digitally engaged patient: Self-monitoring and self-care in the digital health era. Social Theory & Health, 11: 256–270.

Ortega, Esther; Romero, Carmen; Ibáñez, Rebeca (2014). Discurso activista y estatus médico de lo trans: hacia una reconfiguración de cuidados y diagnósticos. In Pérez Sedeño, Eulalia; Ortega, Esther (eds.). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología (521-572). Madrid: Cátedra.

Ortega, Esther; García-Dauder, S.; Gregori, Nuria; Pérez-Sedeño, Eulalia (2018). Practices and knowledge: philosophy of biomedicine, governance and citizen participation. In Belén Laspra; José A. López Cerezo (ed.), Spanish Philosophy of Technology – Contemporary Work from the Spanish Speaking Community. Springer.

Pavone, Vincenzo; Goven, Jonna (ed.) (2017). Bioeconomies. Life, Technology, and Capital in the 21st Century. London: Palgrave MacMillan.

Prior, Lindsay (2003). Belief, knowledge and expertise: the emergence of the lay expert in medical sociology. Sociology of Health & Illness, 25(3): 41-57.

Rabeharisoa, Volona (2008). Experience, knowledge and empowerment: the increasing role of patient organizations in staging, weighting and circulating experience and knowledge. In M. Akrich; J. Nunes; F. Paterson; V. Rabeharisoa (eds.), The Dynamics of Patient Organizations in Europe. París: Presses de l’École de Mine.

Romero-Bachiller, Carmen and Santoro, Pablo (in press). Virtuous and Wicked Bacteria at Dance: Hybrid Zones, Boundary Work and Microbiota in Human Breast Milk Banking. Tecnoscienza.

Ruiz-Marcos, Lorena (2015). Cuando la memoria pasa por la piel. Escenarios del cuidado en la enfermedad de Alzheimer. Tesis doctoral no publicada. Departamento de Sociología V, Universidad Complutense de Madrid.

Santoro, Pablo; Romero-Bachiller, Carmen (2017). Thinking (the bioeconomies) through care. Patients‘ engagement with the bioeconomies of parenting. In V. Pavone; J. Goven (eds.), Bioeconomies: Life, Technology and Capital in the 21st century. London: Palgrave Macmillan.

Tuana, Nancy (2006). The speculum of ignorance: The women‘s health movement and epistemologies of ignorance. Hypatia, 21(3): 1-19.

Wehling, Peter; Viehöver, Willy; Koenen, Sophia (eds.) (2015). The Public Shaping of Medical Research: Patient Associations, Health Movements and Biomedicine. London: Routledge.

MerkenMerken

easst review

Biomedicine and gendered bodies: committed articulation as a feminist methodology

Leave a comment

We present the research trajectory and current projects of the Science, Technology and Gender research group of Madrid, an interdisciplinary team composed of philosophers of science, sociologists, social psychologists, historians, nurses and anthropologists, most of them women. Focusing on biomedicine and its relationships to bodies, gender and activism, the group has opened a line of research based on feminist studies and STS which was practically absent from Spanish academia.

The challenge of building a feminist and interdisciplinary STS team

In contrast to other countries, STS studies in Spain have had scarce institutional support. Recognition is even more limited if STS Studies include the term “feminism”. For this reason our team was not organised by a university department or an already existing STS institution. Rather on the contrary: the very trajectory of the team has contributed to the creation of one: the Science, Technology and Society department in CSIC -the Spanish National Research Council, which is the main state research institution. The Science, Technology and Gender research group in Madrid emerged more as a personal and risky endeavour carried out by Eulalia Pérez-Sedeño (CSIC Research Professor), along with some other feminist researchers, to develop a Science, Technology and Gender field in Spain. Despite this lack of support and informality, the group has enjoyed greater flexibility and interdisciplinarity, as it has never been tied to narrow disciplinary boundaries.

Fig. 1: Eulalia Pérez-Sedeño y S. García-Dauder.

Although membership has varied over the years, the group is formed of philosophers of science, sociologists, social psychologists, historians, nurses and anthropologists, most of them women. The team brings together scholars from different institutions, particularly from the STS department at the Institute of Philosophy-CSIC, the department of Social Theory at the Complutense University and the area of Social Psychology at Rey Juan Carlos University, but also from other institutional and non-institutional locations. The original meeting ground for the group, which started to function around 2004, was a feminist epistemological proposal: that a more democratic and inclusive scientific community would result in fairer and more objective science (González-García and Pérez-Sedeño, 2002; Romero-Bachiller and García-Dauder, 2006). Research carried out by the team is characterised by the confluence of feminist epistemologies, STS, anthropology of the body and social studies of biosciences, with a particular orientation towards Science, Technology and Gender issues. Our investigations have always maintained an empirical connection to the context of Spain, building links with diverse social actors, from activist groups to scholars from other areas or biomedical professionals.

Research trajectory

Since 2004, our team has been awarded several STS and STG-related competitive projects, funded by the Spanish Public R+D Plan, which have functioned as a way of connecting individual research and the interests of the team members. The first three projects carried out by the group, STS Interactions in Biosocial Sciences and Medical Technologies (2004-2007, I+D+I 29/03); Sciences and Technologies of the Body from an STS Perspective (2007-2010, HUM2006-06327/FISO); and Cartographies of the Body: Biopolitics of Science and Technology (2010-2013, FFI2009-07138), featured Eulalia Pérez-Sedeño as the main researcher. The evolution of the careers of the team’s junior members led to a subsequent coordinated project, Visions and Versions of Medical Biotechnologies (2013-2016), with two subprojects: Governance, Public Understanding and Hidden Innovations, led by Pérez-Sedeño (FFI2012-38912-C02-01), and Analysis of the Production and Circulation of Lay/Expert Knowledges in Biomedical Practices, led by García-Dauder (FFI2012-38912-C02-02). Since 2016 we have been carrying out two different but coordinated projects: Multiple Voices, Plural Knowledges and Biomedical Technologies (2016-2019), led by Pérez-Sedeño, and Feminist Epistemologies and Health Activisms: Emergent Practices, Care and Knowledges in Biomedical Contexts (2017-2020, FEM2016-76797-R), led by Romero-Bachiller.

These funds have served as umbrella projects for our team members’ empirical research, teaching, seminars and academic supervision, allowing for the consolidation of a line of research which had been practically absent from Spanish academia. All of these activities carried out by the group have culminated in many papers, presentations and articles, several PhD dissertations and two edited collections, Cuerpos y Diferencias (Pérez-Sedeño and Ibáñez, 2012) and Cartografías del cuerpo. Biopolíticas de la ciencia y la tecnología (Pérez-Sedeño and Ortega, 2014). Since 2005 the group has also annually organised an international workshop in Madrid where Spanish and Latin American researchers, along with scholars from other geographic origins, can present their research, share their interests and discuss current issues related to the complex intersections between science and gender. Throughout our history we have formed ties with many other research groups, both in Spain and internationally, and we have received visits from various STS, STG and gender studies scholars. Some members of the team have also been active in different STS networks, such as Redes-CTS (the Spanish-Portuguese STS Network) or EASST.

Fig. 2: S. García-Dauder and Nuria Gregory, “Multidisciplinarity and psychosocial turn in the management of intersex”, presentation at the X International Workshop Science, Technology and Gender: Visions and Versions of Biomedical Technologies, Medialab Prado Madrid (23rd-25th March, 2015).

Fig. 3: Anne Fausto-Sterling and Carmen Romero-Bachiller, Anne Fausto-Sterling “Gender as Process, Not Trait: dynamic systems approaches to the origins of difference in infancy“, invited conference, XII International Workshop Science, Technology and Gender: Knowledges, practices and activism from feminist epistemologies, Centro de Ciencias Humanas y Sociales, CSIC, Madrid (21st-23rd June, 2017). Photographs taken by a team member.

As the names of our projects suggest, our group maintained a special focus on bodies during the first few years, analysing how biomedical practices and discourses result in the production of particular types of bodies, and especially how they act upon women’s bodies and re/produce boundaries between sexed bodies. Different empirical case studies were addressed by the team, allowing for a comparative perspective between specific biomedical technologies: from reproductive technologies or plastic surgery to sex-assignment procedures and food technologies. The comparison of these diverse technoscientific fields, with their focus always coming from the context of Spanish reality, gave way to the development of several analytic perspectives and questions, such as: How are bodies materially and semiotically produced? How are bodies gendered? What is “the human”? How do norms and differences function in biomedicine? How are logics of care and choice put to play?

We would like to highlight the critical work done by the team in its initial years on the lack of representation of women’s bodies in assisted reproductive technology discourses and practices (Pérez-Sedeño, 2004; Sánchez, 2004). We also consider noteworthy the pioneering work on the situation of psycho-medical regulation of sex/gender dualisms in the treatment of intersex conditions in Spain (Gregori, 2006; García-Dauder, Romero-Bachiller and Ortega, 2007). In later works we analyse how the “human” and “individuality” are made -the “individual patient”- in reproductive technologies. Whereas those technologies are deeply connected with women’s bodies, the center of attention tends to be displaced towards the “couple”, the “embryo”, or some other parts of the women’s body that become externalized (Ruiz and Romero-Bachiller, 2010; Bergmann, 2014; Pérez-Sedeño and Sánchez, 2014). In the case of therapeutic technologies, “molecular biopolitics” fragments bodies into transferable tissues that can be separated from their original settings, mobilised by clinics and reused in other bodies -cord blood banking and ova donation- (Santoro, 2009; Miranda, 2014). We have also analysed how bodies can be perfected and regulated through food, as is the case with cholesterol control and eating disorders (Ibáñez and Santoro, 2012; González Aguado, 2014), and other aesthetic medical practices, such as mammary implants (Pérez Sedeño, 2012, 2014). We additionally consider how bodies are surgically fixed as humanly livable through the medical assignation of a single sex within the sexual dichotomy, e.g., in intersex conditions (García-Dauder, 2014; Gregori, 2014).

Committed articulation as a way of doing research in STS/STG

Given the proximity that many of our projects have had with social movements and feminist and LGBT activist groups, a characteristic trend that has emerged throughout the different projects of our group is a way of doing research we refer to as “committed articulation”. Initially, the team employed mostly qualitative methodologies based on critical discourse and representation analysis -employing “classical techniques” such as semi-structured in-depth interviews, focus groups and discursive analysis of media or on-line productions. Later on, seeking to highlight how bodies are made in biomedical contexts, an ethnographic approach on these practices was favoured. Over the years, and with more than a decade of committed research on trans and intersex medical interventions working in, with, and alongside collectives, using Jay Ruby’s (1991) terminology, our methodological stance has adopted the form of a committed support rather than a detached extraction of information. This has allowed for emergent and more participatory methodologies to be constructed alongside collectives, whose goals very often go beyond “research” as such. We have named such an approach “committed articulation”. It is a methodology of processes, with a strong embodied and activist commitment (Esteban, 2011), anchored in standpoint feminist epistemologies and consciously aware of their political implications. A methodological stance where researchers are situated in an assemblage of relations along with different actors and voices articulated around a particular phenomenon. Research is, therefore, part of the assemblage itself. Thus, the impact of such a relation is part of a collective learning process, and the given results are never detached or aseptic. Yet, recognising co-production does not eliminate power relations altogether, and these need to be accounted for in any particular intervention. We may talk, then, of hybrid practices of research, activism, social transformation and teaching. An approach that is allowing us to recognise and bring to the fore knowledges emanated from health activism, participating in their processes of expertization, “getting undone science done” and acting as “epistemic correctives” (Hess, 2009).

Current research

Starting in 2013, our more recent research has been dedicated to two projects. In the project Visions and Versions of Medical Biotechnologies (2013-2016), our focus was not so much centered around how diverse biomedical technologies shape “the body multiple” (Mol, 2002), but around the different forms of public participation in the production of biomedical knowledge. We were also especially focused on how expert knowledge is constituted, in processes of expertification (Epstein, 1996), and, -questioning this dichotomy- “lay/expert” knowledge interchanges. In most cases, we aimed our attention at controversy analysis -in nosology, diagnosis, etiology, treatment and bioethical issues- and how a democratic re-articulation of knowledge is produced in a context of digital citizenship and citizen participation in health (García-Dauder and Romero-Bachiller, 2012; Romero-Bachiller, Ibáñez and Ortega, 2014; García-Dauder, Gregori and Hurtado, 2015; Hurtado, 2017).

We have been particularly interested in the figure of the “expert patient” or the “lay expert” and their hybrid experiential/activist/expert knowledge (Akrich, 2010; Akrich, O’Donovan and Rabeharisoa, 2015). Thus, we have addressed different cases of “epistemic communities”: patient organizations and online collectives constituted around a concrete health condition, that move from serving as a counseling and emotional support role within the community, to spreading and disclosing knowledge to the outside, to their own production of knowledge. Concretely, both the International Campaign for Trans Depathologization, and some intersex collectives, such as GRAPSIA -a Spanish support group for relatives and people with Insensitivity Androgynous Syndrome- are paradigmatic examples of “epistemic correctives” in health, identifying undone science and producing activism-based evidence, inverting the concept of “evidence-based activism” as defined by Akrich, O’Donovan y Rabeharisoa (2013) (Ortega, García-Dauder, Gregori and Pérez Sedeño, 2017).

Stemming from that work, the current project of the team, Feminist Epistemologies and Health Activisms, investigates emergent knowledges -including how-knowledge, caring practices and experiential knowledge- produced by feminist activism in health. Our objective is to analyse examples in the context of Spain of what Nancy Tuana (2006) has identified as the move from “epistemologies of ignorance” to “epistemologies of resistance”. In this project we are also introducing innovative methodologies that try to connect STS/STG research, health professionals and health activism with formal and informal teaching and learning procedures, and with more horizontal and inclusive formats to favour open conversations.

Teaching profile and research training

Our group members have multiple institutional assignments, which increases interdisciplinarity, and also multiplies our teaching participation in various university programmes and institutions, some of them directed towards health professionals. Currently, team members teach Sociology and Anthropology for the Nursing degree programme at both the Complutense University and University Rey Juan Carlos, and Sociology of Science for the Sociology programme at the Complutense University. Our members have also been participating in several innovative teaching projects, such as “Salud y sociedad” (Health and Society), lead by Elena Casado Aparicio, Pablo Santoro and Pablo Messeguer, which aims to go beyond the biomedical paradigm in nursing by promoting a socio-practical knowledge based on collaboration, tinkering and caring.

In addition, the team is highly committed to training researchers, which we do by extending our teaching to postgraduate M.A. courses at different institutions: the M.A. of Science, Technology and Society (CSIC); the M.A. of Health and Gender (URJC) and the M.A. of Sociocultural Analysis (UCM). Throughout the years, our group’s research development has also opened the way for varying promotions for its members. Some of them have completed their PhDs in its framework (Miranda, 2013; Ibáñez, 2014; Ortega, 2014; Gregori, 2015; Ruiz Marcos, 2015) and some have gained seniority and are now leading research projects and tutoring PhDs themselves. New members have joined the team as well, and their presence has contributed a revitalizing and renewing effect to the group, allowing for its expansion and maturation.

To conclude, the Science Technology and Gender research team of Madrid has contributed to the development and recognition of STS/STG Studies within the Spanish context, working from a perspective of commited articulation between research, activism and teaching.

References

Akrich, Madeleine (2010). From communities of practice to epistemic communities: health mobilizations on the internet. Sociological Research Online, 15(2): 10.

Akrich, Madeleine; O‘Donovan, Orla; Rabeharisoa, Volona (2015). The entanglement of scientific and political claims: towards a new form of patients’ activism. In P. Wehling; W. Viehöver y S. Koenen (ed.), The Public Shaping of Medical Research. London: Routledge.

Bergmann, Sven (2014). La genética es como la masa de la pizza. El matching y la clasificación del fenotipo como práctica y decisión cultural en las clínicas de reproducción asistida. In Pérez-Sedeño, Eulalia; Ortega, Esther (eds.). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología (307-352). Madrid, Cátedra.

Callon, Michel; Rabeharisoa, Volona (2003). Research “in the wild” and the shaping of new social identities. Technology in Society, 25: 193-204.

Epstein, Steven (1996). Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.

Esteban, M. Luz (2011). Crítica al pensamiento amoroso. Barcelona: Bellaterra.

García-Dauder, S. (2014). La regulación tecnológica del dualismo sexual y el diseño de cuerpos normativos. In Pérez-Sedeño, Eulalia; Ortega, Esther (eds.). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología (469-520). Madrid: Cátedra.

García-Dauder, S.; Romero-Bachiller, Carmen (2012). Los desplazamientos políticos de las categorías médicas: actores, discursos y relaciones en la controversia “alteraciones del desarrollo sexual” versus “Intersexualidad”. In Pérez-Sedeño, Eulalia; Ibáñez, Rebeca (eds.). Cuerpos y diferencias (213- 240). Madrid, Plaza y Valdés.

García-Dauder, S.; Romero-Bachiller, Carmen; Ortega, Esther (2007). Cossos insubmissos i mutilació genital: La regulació tecno-mèdica dels cossos sexuats. In Armengol, Josep M. (ed.). Masculinitats per al segle XXI (35-45). Barcelona: CEDIC.

García-Dauder, S.; Gregori, Nuria; Hurtado, Inmaculada (2015). Usos de lo psicosocial en la investigación y tratamiento de las intersexualidades/DSD. Universitas psychologica, 14(5): 1649-1666.

González, María (2014). Las caras ocultas de la anorexia: diferencias relacionales de lo bello, lo bueno y lo blanco. In Pérez-Sedeño, Eulalia; Ortega, Esther (eds.). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología (133-191). Madrid: Cátedra.

González, Marta. I.; Pérez-Sedeño, Eulalia (2002). Ciencia, tecnología y género. Revista Iberoamericana de Ciencia, Tecnología, sociedad e innovación, 2. Disponible en http://www.oei.es/historico/revistactsi/numero2/varios2.htm

Gregori, Nuria (2006). Los cuerpos ficticios de la biomedicina. El proceso de construcción del género en los protocolos médicos de asignación de sexo en bebés intersexuales. AIBR. Revista de Antropología Iberoamericana, 1(1).Disponible en: http://www.redalyc.org/html/623/62310108/

Gregori, Nuria (2014). “Llegar a ser” mujer/hombre desde un diagnóstico de intersexualidad o ADS. In Pérez-Sedeño, Eulalia; Ortega, Esther (eds.). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología (423-468). Madrid: Cátedra.

Gregori, Nuria (2015). Encuentros y des-encuentros en torno a las intersexualidades/DSD: narrativas, procesos y emergencias. Tesis doctoral, Universidad de Valencia.

Hurtado, Inmaculada (2017). Asociaciones y disociaciones: agentes, discursos y controversias en torno a la hiperactividad infantil. Salud Colectiva, 13, 321-335.

Ibáñez, Rebeca (2014). Bad to eat? Empirical explorations of fat. Tesis doctoral, Universidad de Salamanca.

Ibáñez, Rebeca; Santoro, Pablo (2012). Elecciones inciertas en tiempos inciertos: «elección informada» en el almacenamiento de células embrionarias de cordón umbilical y los alimentos funcionales. In Pérez-Sedeño, Eulalia; Ibáñez, Rebeca (eds.). Cuerpos y diferencias (179-193). Madrid: Plaza y Valdés.

Miranda, Mª José (2013). Fenomenología de las agencialidades materiales en la investigación con células troncales. Tesis doctoral, Universidad de Santiago de Compostela.

Miranda, Mª José (2014). Medicina regenerativa y terapia celular: turismos, patentes y feminismos. In Pérez-Sedeño, Eulalia; Ortega, Esther (eds.). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología (353-389). Madrid: Cátedra.

Mol, Annemarie (2002). The Body Multiple. Ontology in Medical Practice. Durham: Duke University Press.

Ortega, Esther (2014). La cuestión del sexo/género en medicina: tecnologías de reasignación de sexo y valores de género en España. Tesis doctoral, Universidad de Santiago de Compostela.

Ortega, Esther; Romero-Bachiller, Carmen; Ibáñez, Rebeca (2014). Discurso activista y estatus médico de lo trans: hacia una reconfiguración de cuidados y diagnósticos. In Pérez Sedeño, Eulalia; Ortega, Esther (eds.). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología (521-572). Madrid: Cátedra.

Pérez-Sedeño, Eulalia (2004). Sociedad, cultura y tecnologías reproductivas. In Actas del IV Congreso de la Sociedad de Lógica, Metodología y Filosofía de la Ciencia en España (pp. 438-441). Valladolid: Universidad de Valladolid.

Pérez-Sedeño, Eulalia (2012). Ciencias y tecnologías del cuerpo: la práctica de la tecnología de los implantes mamarios. In Pérez-Sedeño, Eulalia; Ibáñez, Rebeca (eds.). Cuerpos y diferencias (131-152). Madrid: Plaza y Valdés.

Pérez-Sedeño, Eulalia (2014). Feminismo, ética y cirugía estética. In Pérez-Sedeño, Eulalia; Ortega, Esther (eds.). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología (91-132). Madrid: Cátedra.

Pérez-Sedeño, Eulalia; Ibáñez, Rebeca (eds.) (2012). Cuerpos y Diferencias. Madrid: Plaza y Valdés.

Pérez-Sedeño, Eulalia; Ortega, Esther (eds.) (2014). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología. Madrid: Cátedra.

Pérez-Sedeño, Eulalia; Sánchez, Ana (2014). Asimetrías y olvidos en las tecnologías de reproducción asistida. In Pérez-Sedeño, Eulalia; Ortega, Esther (eds.). Cartografías del cuerpo: biopolíticas de la ciencia y la tecnología (195-244). Madrid: Cátedra.

Romero-Bachiller, Carmen; García-Dauder, S. (2006). Epistemologías feministas y democracia radical. In Eulalia Pérez-Sedeño (ed.), Ciencia, tecnología y género en Iberoamérica (263-271). Madrid: CSIC.

Ruby, Jay (1991). Speaking For, Speaking About, Speaking With, or Speaking Alongside- An Anthropological and Documentary Dilemma. Visual Anthropology Review. 7(2), 50-67.

Ruiz-Marcos, Lorena (2015). Cuando la memoria pasa por la piel. Escenarios del cuidado en la enfermedad de Alzheimer. Tesis doctoral, Universidad Complutense de Madrid.

Ruiz-Marcos, Lorena; Romero-Bachiller, Carmen (2010). Embriones, no nacidos y otras especies. una coreografía de los límites de la vida humana. Athenea Digital. Revista de pensamiento e investigación social, (19), 29-50.

Sánchez, Ana (2004). La investigación en células germinales embrionarias. In Actas del IV Congreso de la Sociedad de Lógica, Metodología y Filosofía de la Ciencia en España (pp. 442-446). Valladolid: Universidad de Valladolid.

Santoro, Pablo (2009). From (public?) waste to (private?) value. The regulation of private cord blood banking in Spain. Science Studies, 22(1), 3-24.

Santoro, Pablo y Romero-Bachiller, Carmen (2017). Thinking (the bioeconomies) through care. Patients› engagement with the bioeconomies of parenting. In V. Pavone y J. Goven (ed.), Bioeconomies: Life, Technology and Capital in the 21st century. London: Palgrave Macmillan.

Tuana, Nancy (2006). The speculum of ignorance: The women›s health movement and epistemologies of ignorance. Hypatia, 21(3): 1-19.

MerkenMerken

EASST-Eurograd