By now, the laboratory tradition, crafting transportable knowledge that allows for comparison, has been amply studied. However, other knowledge traditions, notably that of the clinic, deserve further articulation. The authors contribute to this by unraveling some specificities of rehabilitation practice. How do laboratory and clinical traditions in rehabilitation relate to independence? The first seeks to quantify people's independence; the latter attends to qualitatively different ways of being independent. While measuring independence is a matter of aggregating scores on a priori established (...) dimensions, clinical rehabilitation concerns coordinating different ways of being independent. While independence scales map a linear development in time, rehabilitation participants juggle with time, including uncertain futures in their present. In clinical practice, then, independence is neither a single, coherent, fact nor a clear-cut, stable goal. Instead, professionals as well as patients work by creatively doctoring with the large variety of elements that are relevant to daily life with long-term disabilities. (shrink)

In conjunction with the growing feminist literature on pregnancy and visualization, this paper uses Foucault’s The Birth of the Clinic to demonstrate how the effort to make the interior of the pregnant body visible in medical discourse was a crucial part of the development of the modern medical gaze. In doing so I develop two concurrent arguments. First, I argue that the pathological corpse of the Clinic can conceptually serve as a double for the pregnant body as it emerged in (...) modern medicine in the 20th century. At the same time I use the insights of the Clinic to illustrate changes in pregnancy from early modernity to the 20th century. In early modernity, the pregnant body was understood in terms of generation, as a tree that bears fruit; by the 19th century, the pregnant body was a machine that reproduced the species. This transition can be seen in the overlap of pathology and pregnancy in early modernity, an overlap that continued throughout the 19 century and is inadvertently reinforced through the practice of ultrasound. (shrink)

Drawing on sociological and anthropological studies, the aim of this article is to reconstruct how obstetric technologies contribute to a moral conception of pregnancy and motherhood, and to evaluate that conception from a normative point of view. Obstetrics and midwifery, so the assumption, are value-laden, value-producing and value-reproducing practices, values that shape the social perception of what it means to be a “good” pregnant woman and to be a “good” mother. Activities in the medical field of reproduction contribute to “kinning”, (...) that is the making of particular social relationships marked by closeness and special moral obligations. Three technologies, which belong to standard procedures in prenatal care in postmodern societies, are presently investigated: informed consent in prenatal care, obstetric sonogram, and birth plan. Their widespread application issupposed to serve the moral goal of effecting patient autonomy. A reconstruction of the actual moral implications of these technologies, however, reveals that this goal is missed in multiple ways. Informed consent situations are marked by involuntariness and blindness to social dimensions of decision-making; obstetric sonograms construct moral subjectivity and agency in a way that attribute inconsistent and unreasonable moral responsibilities to the pregnant woman; and birth plans obscure the need for a healthcare environment that reflects a shared-decision-making model, rather than a rational-choice-framework. (shrink)

‘Experiential knowledge’ is increasingly recognised as an important influence on reproductive decision-making. ‘Experiential knowledge of disability’ in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of ‘experiential knowledge’ has been widely critiqued for its idiosyncrasy, its permanent state of flux and its inferiority to knowledge. This paper explores some of these critiques through an analysis of the nature and uses of experiential knowledge within the (...) context of reproductive decision-making. Seventeen women with Spinal Muscular Atrophy or with SMA in their family living in the UK took part in two in-depth interviews: one in 2007-9 and the second in 2013-4. By comparing and contrasting these women’s accounts at two time points, the stark contrast between ‘lived experiences’ of SMA and the various way these experiences came to be transformed into, and presented as, ‘knowledge’ by and through reproductive decisions is demonstrated. Through so-doing, this paper highlights the contrasting- and sometimes competing- experiential frameworks for understanding SMA that emerge from this process across time and context. However, rather than presenting this as evidence of fallibility, this paper argues for a move away from the notion that ‘knowledge’ is an appropriate vessel with which to understand, capture and transfer the experiential. Rather, we need to consider how to value such insights in ways that harness their inherent strengths without leaving simultaneously leaving them vulnerable to the epistemological critiques attracted by the label of ‘knowledge’. (shrink)

This paper is a response to Henk ten Have's Genetics and Culture: The Geneticization thesis . In it, I refute Ten Have's suggestion that geneticization is not the sort of process that can be measured and commented on in terms of empirical evidence,even if he is correct in suggesting that it should be seen as part of ‘philosophical discourse’. At the end, I relate this discussion to broader debates within bioethics between the social science and philosophy, and suggest the need (...) for philosophical approaches to take the social sciences seriously. (shrink)