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Purpose – Researchers use the concept of biosociality and a disability studies framework of empowerment to present and analyze examples of community formation and participation for youth with pediatric multiple sclerosis.

Methodology – The data were collected using participant observation, individual and focus group interviews during Teen Adventure Camps held in the summers of 2004–2009 and an Educational Transition Retreat held in the fall of 2008.

Findings – Evidence of community formation and identification include the development of formal and informal systems for mutual support and mentoring, as well as transformations in self-perception and collective identity. Challenges to community formation include differing perspectives about disability-pride vs. diagnosis-specific affiliations.

Research implications – This research indicates that there are many pathways to individual and community identification which may include and even intertwine both diagnosis-specific and disability-pride approaches. The process of community formation is transformative, thus preferences with regard to community identification should not be considered stable, but rather understood as a developmental process that may change over time.

Originality/value of paper – Building upon social and minority group theories, this research moved beyond social critique to develop and implement strategies for community development, individual, and group empowerment.

Self-tracking is becoming a prominent and ubiquitous feature in contemporary practices of health and wellness management. Over the last few years, we have witnessed a rapid development in digital tracking devices, apps and platforms, together with the emergence of health movements such as the Quantified Self. As the world is becoming increasingly ruled by metrics and data, we are becoming ever more reliant on technologies of tracking and measurement to manage and evaluate various spheres of our lives including work, leisure, performance, and health. This chapter begins with a brief outline of some of the key theoretical approaches that have been informing the scholarly debates on the rise of self-tracking. The chapter then moves on to discuss at length the findings of an international survey study conducted by the author with users of self-tracking technologies to discuss the ways in which they perceive and experience these practices, and the various rationales behind their adoption of self-tracking in the first place. The chapter also addresses participants’ attitudes towards issues of privacy and data sharing and protection which seem to be dominated by a lack of concern regarding the use and sharing of self-tracking data with third parties. Some of the overarching sentiments vis-à-vis these issues can be roughly categorised according to feelings of ‘trust’ towards companies and how they handle data, a sense of ‘resignation’ in the face of what is perceived as an all-encompassing and ubiquitous data use, feelings of ‘self-insignificance’ which translates into the belief that one’s data is of no value to others, and the familiar expression of ‘the innocent have nothing to hide’. Overall, this chapter highlights the benefits and risks of self-tracking practices as experienced and articulated by the participants, while providing a critical reflection on the rise of personal metrics and the culture of measurement and quantification.

This study evaluates cross-national differences in public beliefs about the causes of health and the role of these beliefs in shaping attitudes regarding health policy.

The study uses data from the 2011 International Social Survey Program, which includes questions on health and health care, asked in 29 countries. Respondents were asked about four specific causes of poor health (i.e., genes, behavior, the environment, and poverty). Respondents were also asked about their attitudes regarding three aspects of health policy: their support for government-provided care, the perceived fairness of income disparities in medical treatment, and their support for providing health care to noncitizens.

The study has three findings. First, the study reveals the global reach of a multicausal view. The four beliefs about the causes of poor health are positively correlated in all countries. However, there is considerable cross-national variation in the average support for specific causes. Although in some countries proximate causes, such as genes, are endorsed more frequently than distal causes, such as poverty, this is by no means a uniform pattern. Support for genetic causes is high, but genetic reductionism is rare. Second, the study reveals that health beliefs are fundamentally political beliefs. The single most important determinant of beliefs about the causes of health is the country in which the respondent resides, exceeding in influence religion, education, and even personal experiences with health and health care. Third, the study reveals that the political connotations of health beliefs vary between countries, especially beliefs regarding genes. In general, those who endorse behavioral arguments favor less government involvement in health care and are more accepting of income disparities in the quality of care. Those who endorse the environment and poverty, meanwhile, tend to support a stronger role of government. Yet, the magnitude of these associations varies and, in the case of genetic arguments, even the direction of the association varies. Genetic arguments are frequently associated with support for a stronger role of government, but genetic arguments also are occasionally associated with support for the exclusion of noncitizens from the health care system.

International survey research is valuable for exploring the scope of patterns revealed in a limited set of countries, but it is difficult to pinpoint the source of cross-national differences.

The study demonstrates the importance of national context in shaping health beliefs, as well as the role of beliefs regarding the causes of health in setting the stage for public receptivity to government-provided care. The study also illustrates the value of thinking about beliefs about genes as reflecting larger projects of biocitizenship, at least in some countries.

Here we provide a short reflection on the persistent theme of relationality in reproductive studies which allows us to draw out further insights from each of the chapters.

This chapter takes a critical look at the sociological notion of ‘medicalisation’ in relation to recent trends and developments in neuroscience, neurotechnology and society, taking memory, medicine and the brain as our prime focus and the disease category of mild cognitive impairment (MCI) as our empirical case study. Five relational nexuses in particular are identified as relevant to these developments and debates, namely the bio-psych nexus, the pharma-psych nexus, the selves-subjectivity nexus, the wellness-enhancement nexus, and the neuroculture-neurofuture nexus. We show that developments in memory medicine and the shifting boundaries of cognitive health, as embodied and expressed in the case of MCI, shed further valuable light on these issues and the interconnectivity of these relational nexuses. As an emergent disease and susceptibility category, MCI illuminates not only the fuzzy boundaries between normal and abnormal cognitive functioning, but also the working of neuroscientific, neurocultural and pharmacological interests, which, in this case, are already claiming MCI as the next locus of enhancing the mind and optimising aging. Thinking both within and beyond medicalisation challenges us to find new ways to critically understand the ideas about life and health as they travel, translate or migrate from (neuro)scientific and clinical spheres to cultural life and patient experience.

This edited collection proposes an interdisciplinary and integrated approach to the study of reproductive technologies (RTs), which reflects the fact that many people use different technologies throughout their lifecourse and resists the disciplinary siloing of research on these technologies. The ever-expanding availability of RTs, the continued roll-out of ‘family planning’ and maternity services across low- and middle-income settings and the rapid development of the fertility industry mean that it is more likely than ever that individuals, especially women and trans* people, will engage with more than one RT at some point in their life. These multiple engagements with RTs will affect users' expectations and uptake, as well as the technologies' availability, commercial success, ethical status and social meanings. We offer this book as part of a wider movement in the study of reproduction and RTs, which takes inspiration from the reproductive justice framework to address forms of exclusion, discrimination and stratification that are perpetuated in the development and application of RTs and the ways in which they are studied and theorised. Here, we introduce the project and outline the structure of the book.

Turkish mothers’ interactions with medical authorities during pregnancy and childbirth have developed in a context of risk discourses produced by biomedical experts with surveillance justified by these discourses. Giving meaning to pregnancy and childbirth through the search for the reduction of risks is a reflexive part of Turkish mothers’ everyday life.

This research paper aims to discuss a study examining how pregnancy and childbirth are socially constructed, how increased medicalization is experienced by Turkish mothers, and how they assign meaning to pregnancy and childbirth. A phenomenological research was designed using depth interviews with 10 Turkish mothers with children aged 0–6 years, living in Istanbul who had high education and welfare levels.

The findings shed light on Turkish mothers’ subjective experiences and how medicine as a profession shapes these experiences. With the medicalization of pregnancy and childbirth, how the trust toward the experts, the knowledge of preparation for maternity in an appropriate and responsible manner have become functional for Turkish mothers to create a sense of ontological security are examined.

Risk notification is part of a focus on preventive medicine that is dominant in contemporary Western biomedicine. Genomics has forecasted great advances in alleviating disease and prolonging human life, moving from a reactive to a preventative practice. However, in doing so, genomics redraws boundaries, potentially classifying all people as possible carriers of malfunctioning genes. This chapter presents a critical review of the practice of ‘risk notification’ as undertaken by familial cancer genetic testing services, focusing on the right to be informed or not to be informed and implications of knowing.

With backgrounds in anthropology, psychology and public health, the authors draw upon literature around risk notification from a range of disciplines.

In the context of familial cancer, clients may be asked to provide contact information for biological family members to inform them of their potential genetic risk. Through these processes a number of tensions and issues may emerge that relate to fundamental bioethical principles. The ability and decision whether to know, or conversely, to not know, is ethically fraught. We consider the roles and rights of family members and clients, as well as the broader goal of population health.

While much attention has been devoted to clients’ right to know in the context of medical research and treatment, relatively little work has examined the right not to know and adverse consequences of knowing. This review addresses concerns which have rarely been critically examined and debated in the context of risk notification of biological family members.