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- Convenors:
-
Pia Vuolanto
(Tampere University, Finland)
Caragh Brosnan (University of Newcastle, Australia)
Katharina T. Paul (University of Vienna)
Jenny-Ann Danell (Umea University)
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- Format:
- Traditional Open Panel
Short Abstract:
This open panel welcomes multidisciplinary STS research on the contestations of medical evidence-based knowledge, recommendations and the work of experts and clinicians related to e.g. vaccine hesitancy, nutrition debates, and complementary and alternative medicine.
Long Abstract:
The past decades have seen an increasing prominence of social movements related to vaccine hesitancy, nutrition debates, and complementary and alternative medicine. Here, people’s perceptions about science come into conflicting relationships with biomedical research, recommendations and the work of formal experts and clinicians.
How, and with what effects, do these movements contest established medical knowledge? How do formal experts, clinicians, and policymakers respond to these contestations? What new discursive spaces, such as digital platforms, have emerged that offer room for contestation? What role do new scientific practices, such as citizen science, play in these contestations? This panel seeks to bring together multidisciplinary STS research that engages with these questions across medical fields, ranging from screening to prevention and treatments. Across these areas, social movements, many of which have a long history, challenge established hierarchies of knowledge and seek to make space for the expertise of actors whose knowledge has been marginalized. There is also contestation within and between these movements about what counts as evidence. These debates, in turn, may produce new knowledge hierarchies, or see medical evidence mobilized in new ways. Studying how these contestations and movements are developing is essential for understanding the extent to which the dominance of medicine is challenged or reinforced.
STS approaches and methodologies are well-suited to study the complexity of conflicts around medical knowledge and evidence, especially how these contestations manifest themselves and are produced through both clinical practices and wider societal discourses. We welcome empirical papers that explore practices of contestations of biomedical knowledge and formal expertise as well as conceptual contributions that discuss the effects of these contestations for health care governance.
Accepted papers:
Session 1Johan Soderberg (Göteborg University) Jakob Lundgren (University of Gothenburg)
Short abstract:
The psychedelic alkaloid “ibogaine” is said to interrupt substance dependency. As it is put under control in many jurisdictions, the protocol for administrating Ibogaine has been developed in a trial-by-error way by underground providers in a non-medical setting, or at off-shore clinics.
Long abstract:
Treatment of addiction disorder with “Ibogaine” is an unauthorized alternative to traditional rehabilitation methods and opioid substitution care. Observational studies on patients support the claim that this psychedelic plant, traditionally used in a shamanic context in western Africa, can interrupt substance dependency. It is used against opioids, cocaine, alcohol, even nicotine. The treatment was first developed by self-help opioid user groups in what qualifies as a school-book example of “citizen science” or patient-group activism. The twist is that Ibogaine is put under control in many jurisdictions. It can either be described as a medicine or as a narcotic. Depending on which perspective one takes, the Ibogaine provider will either be framed as a caregiver or as a pusher. Treatment with Ibogaine has therefore flourished in a legal greyzone, administered either by underground providers in a nonmedical context, or, for those who can afford it, at off-shore clinics. In a bid to win legitimacy for their alternative addiction therapy, Ibogaine providers have collected data on dosages, recovery, adverse events, etc. Since the 1990s, they have petitioned authorities to reclassify the substance, mostly to no avail. Now, however, with the advent of the so-called “psychedelic renaissance”, and against the back-drop of the raving opioid crisis in the US, the verdict on Ibogaine stands to change. Question is if Ibogaine will be the cure for addiction, or rather, if this alternative to mainstream pharma will succumb to the same social forces that caused the opioid crisis in the first place.
Linda Pitkänen Pia Vuolanto (Tampere University, Finland) Caragh Brosnan (University of Newcastle, Australia)
Short abstract:
In this presentation we focus on how CAM practitioners in one modality, anthroposophic medicine (AM), depict the relationship to the medical establishment, the entity they are often demarcated from. We show how the AM professionals both ally with and demarcate from the medical establishment.
Long abstract:
The divide between experts and public is challenged in the field of complementary and alternative medicine (CAM). CAM practitioners are usually demarcated from the core of health professionalism in societies where the medical establishment has a strong foothold of the health system. However, CAM practitioners are considered as professionals in relation to their customers and the scope of their CAM practice.
The interest in health practices differing from the conventional medical recommendations is often explained in relation to the knowledge deficit model. In the model, people practicing controversial CAM health modalities are described by lack and ignorance of ‘legitimate’ knowledge.
In this presentation we focus on how CAM practitioners in one modality, anthroposophic medicine (AM), themselves depict the relationship to the medical establishment, the entity they are often demarcated from. By utilizing interviews with eleven AM professionals in Finland and documentary materials of AM in Finland and internationally, we show how the AM professionals both ally with and demarcate from the medical establishment.
We argue that the deficit model has been applied in the AM professional sphere in two dimensions: Firstly, AM professionals’ knowledge is not seen legitimate (intellectual dimension), and secondly their practices are not considered approvable in conventional healthcare (practical dimension). The AM professionals use the arguments of the deficit model and propose it towards the medical establishment, thus utilizing deficit model in reverse and therefore also expose the complexity behind dualistic simplifications where of CAM practitioners are understood to reject conventional medicine.
Ilke Turkmendag (Newcastle University)
Short abstract:
Using the case study of nicotinamide mononucleotide (NMN) supplements, the paper examines the role of promissory discourse in the promotion of supplements that claim to delay or reverse aging and focuses on how the wider discourse of ‘self-optimisation’ guides the longevity movement.
Long abstract:
Longevity movement emphasizes notions of responsibility and health self-management. Longevity influencers, experts and researchers promote longevity supplements, devices, therapies, and lifestyle changes that they claim will slow, stop, or reverse the processes of aging. These longevity protocols include, among others, supplementation with ‘small molecules’. Among all these protocols, a naturally occurring biologically active nucleotide has drawn increasing attention to delay the aging process: Nicotinamide mononucleotide (NMN). It is claimed that NMN can extend the lifespan of model organisms and prevent age-related diseases. Even though human trials on NMN are limited, in longevity markets, these claims led to production of a wide range of formulations, including supplements, health care products, and active pharmaceuticals for human use and for pets. As there is limited evidence on NMN’s clinical safety and efficacy studies, there are risks attached to the use of this expensive supplement.
In November 2022, FDA declared that NMN is not a legal dietary ingredient, and banned the over-the-counter sale of NMN supplements. The ban caused an outcry in longevity communities. This paper focuses on the reaction of the longevity communities to the NMN ban. In the past, consumer activists’ claims-making focused on the failure of regulatory systems in controlling clinically unproven products. Conversely, the longevity communities’ claims-making activities to make an unproven product, NMN, widely available demonstrates the power of the promissory discourse in longevity markets, and the longevity communities’ willingness to hack their body at their own expense in search of the fountain of youth.
Barbara Sena (University of Bergamo)
Short abstract:
This paper focuses on the recent mobilization of TCIM movement to legitimize itself in the evidence-based medicine of the WHO global strategy. It will be analysed as a new political orientation of “epistemic justice” but also as a strategy to push for evidence-based medicine inside TCIM practices.
Long abstract:
Traditional, Complementary and Integrative Medicine (TCIM) refers to a broad set of health care practices that can be part of a country’s own traditional medicine but are not fully integrated into the biomedical health-care system. These practises, despite being very different from each other, have a long history and they are the sum of epistemologies, beliefs, and experiences indigenous to different cultures and movements, used in the maintenance of health as well as in the prevention, diagnosis, improvement or treatment of physical and mental illness. The World Health Organisation has recently delineated a global strategy to regulate and strengthen their evidence-based quality assurance, safety and proper use (WHO, 2019).
This work intends to analyse the TCIM mobilization for its recognition in Western biomedical health contexts and in the political arena of the WHO. On one hand, this movement might be read as a new global political orientation to health, aimed at promoting forms of “democratization” of scientific knowledge (Jasanoff, 2021) and of “epistemic justice” (Widenhorn, 2013). Or, on the contrary, it might be considered a new Foucaldian professional and biopolitical strategy as a response to the erosion of medicine’s political, economic, and social authority (Fries, 2008; Brosnan, 2023) by pushing for evidence-based medicine inside TCIM practices too.
Through the analysis of the WHO documents, this study is going to highlight the characteristics of this scientific contention and its recent evolution and trends, with the aim to understand which factors are contributing to change the relationship between evidence-based medicine and TCIM.
Caragh Brosnan (University of Newcastle, Australia) Pia Vuolanto (Tampere University, Finland)
Short abstract:
This paper examines forms of epistemic authority enacted in naturopathic and acupuncture consultations. Analysis highlights how the discourses, techniques and technologies practitioners use effectively syncretize biomedical and 'refused knowledge' such that they lend each other legitimacy.
Long abstract:
The contested epistemic authority of biomedicine is receiving increased attention in STS, where complementary and alternative medicine (CAM) is often invoked as the quintessential challenger of biomedicine’s legitimacy. However, studies of CAM itself remain relatively scarce in STS, and the basis of CAM’s own epistemic authority, and how this may also be changing, is not well understood. Assessing when and how CAM challenges or aligns with scientific and biomedical epistemologies requires empirical analysis of specific cases of practice within this diverse field. This paper draws from a study that examines the forms of knowledge and evidence produced and applied in practice by two groups of CAM practitioners – naturopaths and acupuncturists – in Australia. Data were gathered by audio-recording practitioner-patient consultations and interviewing practitioners before and afterwards about their knowledge practices. The analysis highlights the range of discourses, techniques and technologies that enact epistemic legitimacy within the consultations. Biomedicine’s authority is rarely explicitly challenged in these spaces, and in various ways it is reinforced through practitioners’ engagement with standard biomedical testing and diagnoses and mimicry of biomedical repertoires. At the same time, traditional CAM paradigms and practices are woven through the consultations, effectively syncretizing biomedicine and 'refused knowledge' (Crabu et al. 2024) such that they lend each other legitimacy. The paper builds on emerging frameworks that identify modes of knowledge legitimation within contested epistemic domains, uncovering the modes that operate in these CAM clinics.
Ellen Algera (University of Amsterdam)
Short abstract:
I present my research on the emergence and use contraceptive self-tracking technologies in The Netherlands. I investigate the way online communities negotiate knowledge about self-tracking to prevent pregnancy and how (my) user activism aims to challenge the Dutch contraceptive care guideline.
Long abstract:
In this presentation I will provide a short overview of my research project on the emergence and use digital self-tracking technologies to prevent pregnancy in The Netherlands. The emergence and use of these technologies is controversial in The Netherlands and beyond. Using ethnographic methods, I investigate the way people use online communities to negotiate knowledge about self-tracking as a valid means to prevent pregnancy. I also explore how professionals providing contraceptive care in general practice are challenged by these new emerging technologies. Combining STS methods (e.g. following the existing evidence in guidelines) with ethnographic methods exploring the field enabled me to contest the Dutch medical guidelines in a scientific publication. With this publication, the activism in online communities has moved to the he professional sphere of general practitioners as well as in the sphere of public debates. STS methodology was particularly helpful in understanding the affective dimension of evidence for both people who use self-tracking as well as providers who warn against their use.
Adele Moore (University of Liverpool)
Short abstract:
Drawing on empirical data, this paper utilises Latour’s notion of Matters of Concern to explore tensions that arise, and various spaces in which they emerge, in relation to contraceptive knowledge practices.
Long abstract:
A myriad of contraceptive technologies are available in the UK; existing literature has illuminated some tensions which arise during contraceptive appointments; through the process of risk assessment (Geampana, 2019), the framework of individual choice (Mann, 2022), and the arena of decision making (Dalessandro et al., 2021). Drawing on empirical data, this paper employs a feminist STS approach to explore agencies of human and non-human actants at play in contraceptive knowledge practices. Data collection involved Instagram netnography, surveys, and interviews with contraceptive users and providers. My findings demonstrate conflicting understandings between the ways contraceptive technologies are approached and interpreted. For providers, contraception symbolises care, ease, and protection from unplanned pregnancies; patients are framed as vulnerable. Whilst contraceptive users express concern regarding the materiality of the technologies, citing potential risks and (side) effects. Opening up contraception as a research site for examining the contestation of medical knowledge practices, I explore how providers’ knowledge often distorts their perception about patient knowledge. So much so, that at times they are unable to acknowledge patients in severe pain. In developing an analysis of these tensions, the paper examines Instagram as a site for contesting contraceptive knowledge production. I show how it provides a platform for users to not only share their stories, but to question the status of facts and evidence in medical knowledge. I argue this provides a space for contestation: It is shared health information that stimulates users to call into question medical knowledge and to privilege their own experiential and tinkering practices.
Léo Girard (University of Geneva)
Short abstract:
A new male contraceptive device has been circulating in France since 2019 in self-help networks, supported by a feminist narrative critical of EBM. Here, I'll show how the imaginary developed around this device enables it to counter its institutional ban.
Long abstract:
The French contraception situation is marked by the very strong dominance of the pill (>50% of contraceptive use before 2010) despite the development of a feminist critique of hormones and the paternalism of institutional medicine. In this context, a new external, non-hormonal male contraceptive device developed and marketed outside current regulations has enjoyed widespread media success since 2019. Its promotion is based on the feminist criticisms mentioned above, and on imaginaries linked to the technical characteristics of the device, described as "natural".
The health authorities have nonetheless taken up the issue, which has led to numerous negotiations with the device's promoters, mobilizing political arguments critical of EBM to deal with reminders of the regulatory requirements. The way in which these agencies chose to appropriate the criticisms to promote a return to the EBM order is particularly interesting to analyze from an STS perspective, with two registers of discourse about the political character of medicine clashing in the same arena of controversy.
The question of the production of ignorance is also at the heart of the discourse, with activists blaming EBM promoters not only for discrediting the experiential and empirical knowledge they have built, but also for being responsible for their risk-taking as a result of the disinterest shown by companies and hospitals in non-hormonal contraception, which does not rely on women's bodies and actively includes the user in the practice.
Mette Kragh-Furbo (University of Liverpool) Bryan Lim (University of Liverpool)
Short abstract:
Focusing on the controversy around mandatory folic acid fortification in the UK, this paper examines how contestations over scientific evidence subtract from the controversy to reach a resolution. The heuristic of thinking with folate is then explored as a way to add to the terms of the debate.
Long abstract:
In 2021, the UK Government announced its plans to implement mandatory folic acid fortification, a public health intervention that has as its aim to reduce the number of pregnancies affected by Neural Tube Defects (NTDs). We might say then that insofar as there exists a problem of NTDs, mandatory folic acid fortification is now being proposed as its solution. Yet, concerns around the adverse health effects of high doses of folic acid – such as the masking of B-12 deficiencies and the possibility of an increased risk of some cancers – have embroiled the intervention in much controversy. Attempts to forge a way forward have been made by reviewing available scientific evidence both for and against mandatory fortification. While such contestations between different medical knowledge and evidence may indeed prove useful in ‘settling’ the controversy, we argue that what this also does is delimit the extent to which we may develop an appreciation for all that folic acid can do. We therefore ask: what might it mean to take folic acid not simply as a solution (i.e. fortification) to the problem of NTDs, but as a problem in its own right? Relatedly, how might doing so change the way we think about the problem of NTDs and its proposed solutions? If contestations over scientific evidence subtract from the controversy to reach a resolution, this paper will think with folate so as to add to the terms of the debate instead.
Hawon Chang (Pusan National University)
Short abstract:
This study explores the topography of knowledge in the site of autism treatment in Korea. Based on discourse analysis and in-depth interviews with various experts dealing with autism, this study will show a unique aspect of the conflicts surrounding knowledge and evidence for autism treatment.
Long abstract:
This study explores the topography of knowledge at the site of autism treatment. Medical recommendations and people's intervention practices for autism do not conflict or coordinate but rather coexist in parallel in Korea. Professionals divide autism interventions into evidence-based practices and complementary and alternative therapies and encourage people with autism and their families to choose the former. However, many therapists and guardians of children with autism attempt alternative therapies, such as hyperbaric oxygen therapy, various types of brain stimulation programs, and nutritional supplements, along with scientifically proven treatments, despite experts' recommendations. The data and knowledge from these trials and errors are regarded as individual, subjective, and secondary information. They are not compared, coordinated, or integrated with established scientific knowledge on autism treatment. However, although at a personal level, it raises questions about how the effectiveness of treatments is proven in autism sciences.
Based on an analysis of discourse in internet communities related to developmental disabilities and in-depth interviews with doctors, therapists, and guardians of children with autism, this study examines their rationales for choosing autism interventions, how they use medical knowledge, and what they regard as evidence. This case study helps us understand the conflicts surrounding medical knowledge and evidence for autism treatments and the failure of such conflicts to generate social movements or broader societal discourse in Korea.