Angela M. Filipe

Globalization and cognitive enhancement: emerging social and ethical challenges for ADHD clinicians.

Globalization of ADHD and the rise of cognitive enhancement have raised fresh concerns about the validity of ADHD diagnosis and the ethics of stimulant drug treatment. We review the literature on these two emerging phenomena, with a focus on the corresponding social, scientific and ethical debates over the universality of ADHD and the use of stimulant drug treatments in a global population of children and adolescents. Drawing on this literature, we reflect on the importance of ethically informed, ecologically sensitive clinical practices in relation to ADHD diagnosis and treatment.

The co-production of what? Knowledge, values, and social relations in health care

“Co-production” is becoming an increasingly popular term in policymaking, governance, and research. While the shift from engagement and involvement to co-production in health care holds the promise of revolutionising health services and research, it is not always evident what counts as co-production: what is being produced, under what circumstances, and with what implications for participants. We discuss these questions and propose that co-production can be understood as an exploratory space and a generative process that leads to different, and sometimes unexpected, forms of knowledge, values, and social relations. By opening up this discussion, we hope to stimulate future debates on co-production as well as draw out ways of thinking differently about collaboration and participation in health care and research. Part of the title of this article is inspired by the book “The Social Construction of What?” by Ian Hacking (Cambridge, MA: Harvard University Press; 2000).

From ‘politics of numbers’ to ‘politics of singularisation’: Patients’ activism and engagement in research on rare diseases in France and Portugal

This article investigates how the engagement of patients’ organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a ‘politics of numbers’ for stating the fact of rare diseases as a major public health problem, and promoted patients’ critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a ‘politics of singularisation’. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this ‘politics of singularisation’ not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.

Making ADHD Evident: Data, Practices, and Diagnostic Protocols in Portugal

ABSTRACT Drawing on medical anthropology and science and technology studies, I present a case study of the diagnosis of attention deficit hyperactivity disorder (ADHD) in Portugal. In a country where ADHD is a relatively recent medical category, still undergoing validation, the diagnosis is not primarily bound to an evidence-making role, and its epidemiology remains largely unknown. Notwithstanding, the diagnosis has been carried out by child psychiatrists and developmental clinicians who describe it as the most prevalent disorder that affects school-aged children and adolescents. In this article, I examine the global data, local diagnostic protocols, and clinical practices that are adapted and selectively mobilized in the making of the diagnosis, in a context in which making ADHD evident is at stake. The findings show that what counts as ADHD and what it means in each setting varies, and that the diagnosis may be understood as a situated process.

Situated Interventions in Health Care? Refiguring the Normative Place and Experimental Practice of Social Science

In recent years, there have been numerous calls for new modes of knowledge production and research that engage with the public more meaningfully and that play a more active role in addressing ‘real world’ issues such as health care access, social justice, and global economic and health inequalities. These calls are both patent in and informed by current frameworks of research funding and grant writing that have been increasingly oriented toward rapid knowledge translation, greater public accountability and engagement, and tangible socioeconomic impact and utility. While this general orientation has drawn attention toward the need for engaged social science and public sociology, it has also been accompanied by broader assumptions around the value of interdisciplinary research and of crosssectoral partnerships with the health and life sciences. Such a shifting configuration has brought many social scientists into the open, albeit muddled, fields of Science as Culture, 2017 Vol. 26, No. 3, 418–423, https://doi.org/10.1080/09505431.2017.1315930

Raising Generation Rx: Mothering Kids with Invisible Disabilities in an Age of Inequality. By Linda M. Blum. New York: New York University Press, 2015. Pp. viii+310.

Recent years have seen an explosion in the number of children diagnosed with “invisible disabilities” such as ADHD, mood and conduct disorders, and high-functioning autism spectrum disorders. Whether they are viewed as biological problems in brain wiring or as results of the increasing medicalization of childhood, the burden of dealing with the day-to-day trials and complex medical and educational decisions falls almost entirely on mothers. Yet few ask how these mothers make sense of their children’s troubles, and to what extent they feel responsibility or blame. Raising Generation Rx offers a groundbreaking study that situates mothers’ experiences within an age of neuroscientific breakthrough, a high-stakes knowledge-based economy, cutbacks in public services and decent jobs, and increased global competition and racialized class and gender inequality.

79.00 (cloth);

This article investigates how the engagement of patients’ organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a ‘politics of numbers’ for stating the fact of rare diseases as a major public health problem, and promoted patients’ critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a ‘politics of singularisation’. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this ‘politics of singularisation’ not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.

27.00 (paper).

This article investigates how the engagement of patients’ organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a ‘politics of numbers’ for stating the fact of rare diseases as a major public health problem, and promoted patients’ critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a ‘politics of singularisation’. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this ‘politics of singularisation’ not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.