On the verge between the scientific and the alternative: Swedish women’s claims about systemic side effects of the copper intrauterine device

Abstract

The article intervenes in discussions on lay knowledge production about health in the Internet era, through the case of a group of women claiming that their use of copper intrauterine devices has led to systemic side effects. Based on online group interviews and written essays, we examine how women embracing these knowledge claims navigate various sources of information, focusing on the role of scientificity in these epistemic negotiations. The women were found to be involved in an active, scientifically oriented process of knowledge formation, which we refer to as a collective labour of scientific patchworking. Meanwhile, due to a perceived lack of scientifically based expertise on their condition, the women reported having little choice but turn to resources with weaker scientific foothold. We argue that the tendency to portray these women’s claims as unscientific simplifies the nature of lay knowledge production, potentially deepening divides between medical authorities and the public.

The different facets of ‘experiential knowledge’ in Swedish women’s claims about systemic side effects of the copper intrauterine device

“…While the components or stages are distinct in that they work according to different principles, in concrete practice they intermingle and continuously inform one another. Indeed, we would argue that the evidence that the participants employ in building their knowledge claims derives much of its force by being based on a composite of various forms of experience-based evidence, alongside non-experiential evidence gathered from scientific and semi-scientific sources (Gunnarsson & Wemrell, 2023).…”

“…Although self-experimentation suffers from significant limitations, it is noteworthy that it has been used as a method for testing scientific hypotheses in medical history (Weisse, 2012). Moreover, the limitations of self-experimentation as an isolated and individualised procedure are partly compensated for through its dialogue not only with the other components of experiential knowledge but, crucially, also with arguments that our participants derived from scientific and semi-scientific sources (Gunnarsson & Wemrell, 2023).…”

“…Finally, the central question regarding the 'evidence' presented by the participants is not whether it is waterproof but whether it is plausible enough to be taken seriously and motivate further consideration and, not least, scientific investigation. Indeed, while most participants felt certain that the claims about systemic side effects of the copper IUD were correct, one of the most central concerns expressed was that research be conducted to test these claims, in light of the lacuna of research on side effects of the copper IUD (Gunnarsson & Wemrell, 2023).…”

“…The need for theoretical problematisation of the epistemic status of experience is accentuated by the current ‘post‐truth’ condition, characterised by a diminished regard for authoritative expertise among both progressive and anti‐democratic groups (Budgeon, 2021; Lynch, 2017). This context heightens the need for analytical tools that can be used to discriminate between and assess various forms of experience‐based contestations of established expertise (Gunnarsson & Wemrell, 2023), in the field of health and beyond.…”

“…Drawing on the accounts of a group of Swedish women claiming that their use of contraceptive copper intrauterine devices (IUDs) 1 has led to side effects unrecognised by health‐care providers, we analyse the role played by personal experience in the women’s epistemic engagements. While not being the only source of information (Gunnarsson & Wemrell, 2023), the women’s own personal experiences, collectively processed mainly through a Facebook group dedicated to the issue of copper‐related side effects of the IUD, constitute a fundamental epistemic resource shaping the women’s knowledge claims. We qualify the concept of experiential knowledge by showing that personal experience as an epistemic resource plays different roles in what we identify as three distinct yet interacting components or stages of experiential knowledge: (1) somatic knowing, (2) collective validation and (3) self‐experimentation.…”