The Anticipatory Politics of Improving Childhood Survival for Sickle Cell Disease

Abstract

Crediting scientific discovery for prolonging life is pervasive in biomedical histories of the genetic blood disorder, sickle cell disease. This includes the preventive strategies, such as newborn screening, that have underwritten the success of its life-extending interventions. Newborn screening is a technology that relies not only upon intact health infrastructures but also expertise and enhanced vigilance on the part of caregivers to anticipate complications while they are still open to circumvention. This paper posits that even after overcoming institutional barriers to make newborn screening equitably available, care and vigilance are resources that are themselves subject to what i term anticipatory politics, where structural conditions also stratify expectations for the future, including the affective appeal of medical innovations. This paper elaborates the paradigm of anticipatory politics through an ethnographic examination of newborn screening to connect the comprehensive care practices that have improved survival for sickle cell disease, and as the burden of mortality shifts to young adulthood, to expose how those who are resourced to care for these futures preferentially stand to benefit from preventive interventions.

Let's Get Back to Normal? COVID-19 and the Logic of Cure

“…Patients increasingly advocate for diagnosis, better care and also rights to cures (Novas, 2006 ) and care, in what Jae ( 2018 ) terms “anticipatory politics”. Curing is bound to the political economy of hope (Novas, 2006 ) and hopelessness (Coyle and Atkinson, 2018 ), as well as transnational promises of the genomic technologies of cure and evidence-based health activism and experimentation (Weatherall, 1990 ; Bharadwaj and Glasner, 2008 ; Rabeharisoa et al, 2014 ).…”

“…The transnational nature of seeking cures in both proven and unproven treatments as well-curative experiments is only expected to grow with the “genetic imperative” (Hacking, 2006 ) and will lead to difficult decisions for disease and patient organizations and community groups, in terms of understanding and delineating between evidence of treatments or trials that are legitimate and regulated; and those that do not work or are speculative (Petersen et al, 2015 ; Song, 2017 ). Jae ( 2018 ) argues that “structural conditions also stratify expectations for the future, including the affective appeal of medical innovations” concerning what treatments or trials for cure are available and what rate of success they have. Kato ( 2018 ) too explains that while genomics becomes tied to cure, nuances have to be made in how patients understand and want cures, with regards to present histories of discrimination, impact of racism, lack of care and scientific understanding about genomic medicine.…”

“…In the UK, screening services in antenatal care, genetic testing, treatments such as hydroxyurea for sickle cell, blood transfusions for both sickle cell and thalassaemia, specialized clinical care and public advocacy have entailed that the conditions can now be viewed as chronic and long-term, whilst in many other places in the world, without access to adequate healthcare, they can be acute and disabling. In the Global North, innovative genomic developments have entailed a shift of research attention so it is focused on improvements in access to therapies, as well as curative possibilities for those with differing expressions of these genetic disorders (Jae, 2018 ). Stem cell transplants for children with the most serious clinical manifestations of the conditions, often from a genetically matched relation such as donor sibling, is an option, in terms of cure, but was not without serious risks, complications and mistrust.…”

“Ready for What?”: Timing and Speculation in Alzheimer’s Disease Drug Development

“…To date, this approach has met with little success; the value of tracking and targeting biomarkers (understood as biological proxies of “predisease” states) remains hotly contested (Frisoni and Visser 2015). Nevertheless, the “anticipatory politics” (Jae 2018) of early detection and pharmaceutical prevention is sufficient to mobilize a whole field of disease-modifying clinical trials for Alzheimer’s. Such trials necessarily involve people who do not fulfill symptomatic criteria for disease and who may consequently neither be seeking treatment nor accessing healthcare (Molinuevo et al 2016).…”

Antycypując przyszłość – diagnoza a doświadczenie w chorobach rzadkich w Polsce

“…In this article, I analyze the results of ethnographic research that was conducted among people with inborn errors of metabolism, their parents, and doctors in Poland. I examine newborn screening technology using the category of "anticipation" in its macro-social and experiential meanings (Adams et al 2009;Jae 2018;Stephan, Flaherty 2019). Drawing from this concept, I attend to both the perspectives of doctors and what parents of children with inborn errors of metabolism experience.…”