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Epigenetics has generated excitement over its potential to inform health disparities research by capturing the molecular signatures of social experiences. This paper highlights the concerns implied by these expectations of epigenetics research and discusses the possible ramifications of ‘molecularizing’ the forms of social suffering currently examined in epigenetics studies. Researchers working with oppressed populations—particularly racially marginalized groups—should further anticipate how their results might be interpreted to avoid fueling prejudiced claims of biological essentialism. Introducing the concept of ‘epigenetic citizenship,’ this paper considers the ways environmentally responsive methylation cues may be used in direct-to-consumer testing, healthcare, and biopolitical interactions. The conclusion addresses the future of social epigenetics research and the utility of an epigenetic citizenship framework.
Inventive producers in Silicon Valley and other innovations sectors are going beyond the simulated animal products of plant-based proteins and cellular technologies to produce a third generation of protein products, making protein the leading edge of high tech food innovation. Since innovators draw on sources not generally recognized as food these products are speculative as both foods and investments. Building on scholarship that examines edibility formation of so-called alternative proteins, we show the deployment of three interlocking narratives that make novel protein products both edible and investible: protein is ubiquitous and protean, which provides myriad opportunities for technological transformation; its longtime associations with vigor, strength and energy, along with current day obsessions with the negatives of fats and carbohydrates, renders it the one remaining macronutrient that it is unequivocally good; and widely circulated discourses of both future shortages and the problems with contemporary livestock production makes producing more an almost indisputable solution. While innovators and investors act as if protein needs this sector to solve an impending crisis and bring its possibilities to fruition, we suggest the inverse—that without protein the sector would be nearly barren of novelty and food, much less the disruption and impact routinely claimed.
Cover page of Outlook on 22 May 2017
Photograph for the cover story on ‘forced surrogacy’ in Outlook magazine
Post by the Health Minister of India on Twitter on 19 February 2020
This article centers on ‘forced surrogacy,’ an underexplored collateral of the erstwhile transnational surrogacy industry in India, to critically analyze recent policy developments around surrogacy regulation in India. Building upon Dalit feminist perspectives, in this article, I argue that ‘forced surrogacy’ is an indentured form of clinical labor performed through the bodies of subaltern women inhabiting the margins of the Indian polity. Analyzing recent media discourses on ‘forced surrogacy’ in conjunction with reproductive legislations formulated between 2005 and 2021, I demonstrate how an indigenous standpoint perspective usefully complicates theorizing about clinical labor highlighting a continuum between caste-based indentured labor and contemporary clinical labor in India. The analysis investigates the necropolitical dimensions of India’s recent policy directive to ban ‘commercial’ surrogacy while condoning ‘altruistic’ surrogacy. Such a criminalization absolves the State of accountability for circumstances that enable ‘forced surrogacy’ outside the limits of both the traditional family and the ‘free’ market. The article concludes with a discussion on how indentured clinical labor reveals the limits of existing normative frameworks that overlook structural realities in governing clinical market regimes, and how these limits in turn become the basis for the extraction of unfree clinical labor from subaltern bodies.
Over the last decades, there has been a worldwide rise of new technologies for controlling the HIV epidemic by expanding antiretroviral medicines. This article examines how the pharmaceutical-driven model of public health, which emerged as a byproduct of antiretroviral treatment (ART) scale-up in Ethiopia, interplayed with local forms of actions, engagements, and voices through which suffering inflicted by the epidemic was cared for. Through the eyes of an Ethiopian woman with HIV, this article illustrates how the increasing emphasis on ART facilitated the defunding of some community-based care practices. Moreover, it rendered the realities of precarious life with HIV invisible in the landscape of therapeutic citizenship. However, for Ethiopians, ART scale-up unfolded amid multiple forms of HIV care practices and relationships that endured stigma, alienation, and uncertainty before and after ART. The experience of surviving the HIV epidemic in Ethiopia provides a vital premise upon which claims of meaningful care are made, and ways to otherwise develop healthcare actions and engagements are sought.
Participants, Jamil and Lennox, drawing the second outline for ‘living without drugs’. Jamil takes a kneeled, prayer position to mark the everyday practice of “handing over will” and paying attention to this vulnerability. We can just make out‘the map’ in Jamil’s representation of the topography of drug use, which gets stuck to the head of his body map (top centre of the photo).
2a: Drawing an outline. 2b: “The wine (yellow) going down and the blood (red) coming up”, and a “chaotic” calendar (left). 2c: “Becoming a series of dates at the hospital” (liver and kidney drawn as hospital buildings), and a compartmentalized head.
“It’s hanging over you”. A figure made while thinking through the data. [This is not a finished piece] Photograph taken by Isla Millar. ©Isla Millar & Penny Maltby.
We live within and are made up of ever-changing chemical flows. Witnessing a “chemical turn” in the social sciences, this article asks what a chemical reading of drugs and bodies can offer an understanding of drug dependency and recovery. Where chemicals render bodies “molecular” (Deleuze and Guattari, 1987), they open them up to more intimate forms of connection that extend our understanding of drug–body relationships beyond limiting categories such as addiction. Rather than a chemical drug entering a biological body, there are chemical interactions that expand the boundaries of where one ends and the other begins. While chemicals have long been a preoccupation in neurological models of addiction, they are seldom taken up in sociological studies of these concerns. Drawing on a series of body-mapping workshops with people in drug recovery/treatment in London, UK, to track these chemical bodies, this article explores the art of living a chemically transformed life. This is an art that thinks with Isabelle Stengers’ (in Stengers and Savransky, 2018) notion of the word to include “not paying attention” as a mode of “paying attention to what may lurk” in living with the ongoing effects of drugs in unequally entangled worlds.
Multimorbidity is considered one of the greatest emerging challenges for contemporary health care systems. However, the meaning of the term ‘multimorbidity’ is not straightforward. Despite many attempts to clarify the definition and its measurement, the concept remains elusive. Still, academic interest in the study of multimorbidity has grown exponentially in the past ten years. In this paper, we trace the emergence of multimorbidity as a ‘matter of concern’ within health care research, exploring what has been called ‘the multimorbidity epidemic’ in the context of changing disease categories. We analyse how multimorbidity as a concept lays bare some major unresolved challenges within contemporary care services and summons up traditional primary care ideals of holistic, person-centred care. However, we argue that the current focus on the measurement and the identification of disease clusters falls short in contributing to better care for people who live with multiple long-term conditions now. Instead, we propose a novel understanding of ‘multimorbidity’ as an experience that manifests through people’s navigations of care infrastructures. To study this experience of multimorbidity, we discuss the potential of social science approaches that focus on ‘living well’ with illness.
This image was appropriated and used as a part of Vote Leave’s Brexit referendum campaign following earlier use online by animal welfare groups. Reproduced with permission of Jo-Anne McArthur/We Animals Media (
A part of the iconography of live animal export campaigns, photographs like this became a photojournalistic staple in the British press in the 1990s. Photo by Martin Argles, Guardian News Image (1991), reproduced with permission of the Guardian News and Media (GNM 18082020). This image is not covered by the CC BY licence and permission needs to be granted by the Guardian in order to reproduce it
This paper uses the deployment of animal welfare as an issue during the ‘Brexit’ referendum as a lens through which to explore the mutual shaping of discourses about care for animals in Britain and the British nation, or the nationalism of animal welfare. Adopting a genealogical outlook, it uses one political advertisement in particular—paid for by the official Vote Leave campaign—as a focalising image and means of opening up the issues, leading to an empirical emphasis on the issue of live animal export as it has mediated ideas about Europe and British identity. Introducing the idea of ‘animal welfare chauvinism’, the paper suggests that animal welfare messages in the context of this constitutional debate were products of chauvinistic and caring impulses which are mutually constitutive and crystallised through discourses formed in relation to contingent historical struggles. Analytically, stress is placed on the constructive role of situated and repeated discursive exchanges, occurring between animal advocates and other national political elites, within which ‘care for animals’ as a national ideal is forged. In this light, the article concludes with reflections on the stakes of entering into an already existing conversation on the ‘national culture of care’ for animals in Britain.
The availability of women willing to donate eggs in Spain is one of the cornerstones that has led the country to become the most desirable European destination for cross-border reproductive care. The reasons for this success are usually attributed to legal and socioeconomic conditions. Much less attention has been paid to the online strategies that fertility clinics in Spain use to inform and recruit young women to become egg providers. This paper addresses this gap by analysing online communication strategies in egg donors’ websites and social media. The narratives and rationalities they underpin are conceptualised as revealing ‘sociotechnical imaginaries’ around egg donation which coproduce new societal interests among young women. The results show that the language used recycles and repurposes egg donors’ motivations towards a normative discourse that puts altruism at the core, while, at the same time, explanations of medical processes and risks generate incomplete and misleading narratives. Finally, this paper describes how these discourses are embedded in a particular kind of branding where not only the notion of altruism is produced but also a complete identity framework. In this framework, donating eggs would not just be an act of solidarity, but would also imply belonging to a community of progressive empowered women, in control over their bodies and with modern consumption capacity: a neoliberal rationality of optimization, self-care and consumerism as forms of liberation.
The article Concussion killjoys: CTE, violence and the brain’s becoming, written by Aryn Martin and Alasdair McMillan, was originally published electronically on the publisher’s internet portal on 30 October 2020 without open access. With the author(s)’ decision to opt for Open Choice the copyright of the article changed on 9 February 2021 to © The Author(s) 2021 and the article is forthwith distributed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit ses/by/4.0/.
In this article, we look at how the politics of reproduction take form in Denmark when people are denied access to IVF. Approaching IVF as a selective reproductive technology, we explore IVF’s selective potential in terms of reproductive governance and reproductive citizenship by analyzing decisions by the Danish State Administration about whether people get access to IVF or not. For that purpose, we had access to assessments of people’s inability to parent that are required by law in case doubts about a person’s ability to parent arise when they seek treatment with IVF in Denmark. Through this analysis, we identify three parenthood and citizenship ideals that characterize reproductive governance and the politics of reproduction in Denmark: (1) the medically sane/sober self whose parenting and societal decisions are not influenced by self-altering medical diagnoses and/or treatment, (2) the independent, capable, and productive self that pursues a meaningful life in societal terms, and (3) the responsible self that actively invests into reproductive futures. Based on this analysis, we argue that people are unduly excluded from reproduction if they are identified as not living up to these ideals because of the intersections of their gendered, bodily, social, and economic positioning.
In this paper, I consider how the ‘new hysteria’ of uterus transplants (UTx) continues traditions of medical experimentation focussed upon the correction of the defective female body. Media accounts of ‘first’ UTx events in the US are analysed to describe the narrative ‘anchors’ used in these accounts. In Sweden and Denmark, UTx is presented within the media as a means to avoid surrogacy, while in the US UTx is constructed as an alternate choice to surrogacy in keeping with the US emphasis on neoliberal choices. These differing approaches to surrogacy and UTx reflect the different social contexts. In media accounts, risks are minimised and success is emphasised, and the potentials of UTx for non-heteronormative reproduction are not mentioned. Despite parallels with other forms of transplantation and surrogacy markets, public representations avoid the potential of a future UTx market.
Popular certification: farm visits in a ‘natural’ environment
Boxing quality eggs. Note the light blue color of the egg shell
Food safety dominates public discourse about health, life, and the body in China today. But incidents of ‘fake food’—including fake eggs and milk powder—raise new questions about how bodily threats are detected and evaluated, and have undermined trust not only in food, but also in official food regulations and tests. In response, new alternative food movements (including organic farms) are seeking to rebuild trust that food is real, not fake—but refuse to rely on official regulations. Drawing on theoretical literature on counterfeit goods and market devices, this paper examines how alternative food producers in Beijing, China qualify their food as authentic in a context where food fraud is expected. Whereas scholars have previously highlighted the role of interpersonal trust in alternative food markets, I argue that alternative farmers rely more on ‘popular certification’ devices—such as farm visits and taste tests—to materially certify the qualities of their food products. These tests differ from official certification because—rooted in sensory experience rather than instrumental tests—they are knowledge-making devices that are accessible to consumers. Linking agrarian change with the problems of knowledge explored by STS scholars, fake food points toward a renewed political economy of qualities.
Dr. Ann McKee uses a split-screen technique, comparing ‘normal’ to CTE pathology in ex-NFLer John Grimsley.
Photo credit: Chris O’Meara/Associated Press
2001 photo of hockey enforcer and CTE victim, Bob Probert. And a young adorer, whose brain also matters. Photo credit: Fred Jewell/Associated Press
CTE, or chronic traumatic encephalopathy, is caused by repetitive head trauma and detected by a distinctive stain for a protein called ‘tau’ in autopsied brain tissue. While the number of diagnosed patients is only in the hundreds, the cultural footprint of the disease in North America is huge, both because those diagnosed are often celebrity-athletes and because millions of children, adolescents and young men and women play collision sports like football and hockey. We argue that the widespread attention to CTE provides a useful wedge to crack open another, heretofore neglected public health concern: repetitive acts of violence in and around hypermasculine sports create subjects whose brains—and characters—are materially shaped by that violence. Brains change materially when delivering blows as well as receiving them, when participating in degrading hazing rituals as victim or assailant, when belittled or assaulted by a coach, when approaching an upcoming game riddled with fear. We adopt a biosocial model of the brain’s becoming to intervene in a linear discourse around CTE that medicalizes and oversimplifies violence, a story that prematurely dissects one slice of the problem from a noxious whole.
Biomaterials—or substances designed to interact with living tissues without stimulating an immune response—gather tissue culture technologies and regeneration research together. In doing so, these man-made materials tether the technological capacity to manipulate and modify living matter outside of bodies to the longstanding ambition in biology to comprehend, and possibly conduct, the physiological capacity of some organisms to repair or to restore themselves following injury or disease. Drawing upon participant-observation with life and material scientists in Dresden, Germany, this article presents a case of an ongoing collaboration between a neuro-regeneration laboratory researching Alzheimer’s disease and a biomaterials institute fabricating novel materials for tissue engineering. Their efforts illustrate how the current incorporation of biomaterials into experimentation on the biology of regeneration is reconfiguring previously established relations among life forms: relations within, between, and beyond the bodily bounds of organisms. In attending to the new relationships being forged between the biological and chemical sciences, their technologies for manipulating living matter, and their evolving conceptions of life, I argue for an anthropological approach to life and science inter vivos—one conceived in the relations between laboratories, disciplines, and experimental forms of both embodied and disembodied life.
Values that interviewees associated with their citizen science activities and communities, by motivational domains and interests served
Genomic citizen science initiatives that promote public involvement in the study or manipulation of genetic information are flourishing. These initiatives are diverse and range from data donation studies, to biological experimentation conducted in home and community laboratories, to self-experimentation. Understanding the values that citizen scientists associate with their activities and communities can be useful to policy development for citizen science. Here, we report values-relevant data from qualitative interviews with 38 stakeholders in genomic citizen science. Applying a theoretical framework that describes values as transcendent beliefs about desirable end states or behaviors that can be categorized according to the motivational goals they express and the interests they serve, we identified nine core values of genomic citizen science: altruism, autonomy, fun, inclusivity, openness, reciprocity, respect, safety, and solidarity.
The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their “chronic living” (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.
Layers of health data. (Color figure online)
It has become a trope to speak of the increasing value of health data in our societies. Such rhetoric is highly performative: it creates expectations, channels and justifies investments in data technologies and infrastructures, and portrays deliberations on political and legal issues as obstacles to the flow of data. Yet, important epistemic and political questions remain unexamined, such as how the value of data is created, what data journeys are envisioned by policies and regulation, and for whom data types are (intended to be) valuable. Drawing on two empirical cases, (a) interviews with physicians on the topic of digital selfcare, and (b) expectations of stakeholders on the use of Real-World Data in clinical trials, as well as existing literature, we propose a typology of what health data help us to do. This typology is intended to foster reflection about the different roles and values that data use unfolds. We conclude by discussing how regulation can better accommodate practices of valuation in the health data domain, with a particular focus on identifying regulatory challenges and opportunities for EU-level policy makers, and how Covid-19 has shed light on new aspects of each case.
A prototype artificial womb is anticipated to be ready for human trials within five years. This technology departs from previous forms of neonatal care. Rather than treating the complications of premature birth, if successful, it will prevent these complications from arising to begin with by extending the period of gestation and allowing the neonate to continue to develop in an environment analogous to the uterus. Much of the social-scientific literature suggests that artificial wombs will improve health outcomes for pregnant people and neonates in general and may improve or expand reproductive choice in pregnancy. Using a critical lens informed by a reproductive justice framework, I argue that this approach to artificial wombs meets a challenge in (1), the persistence of racialized inequity in health outcomes for pregnant people and neonates and (2) historical and contemporary instances of classed and racialized reproductive coercion. I argue that beyond acting to prevent circumstances in which the artificial womb creates opportunities for coercion or exacerbates existing inequity, we might explore alternative paths for this technology as a tool to benefit all pregnant people by reorienting the discourse toward a focus on justice. I propose an approach to artificial wombs informed by a reproductive justice framework that centralizes those who have been most marginalized within reproductive care at each stage of the technology’s design, development, and implementation.
In 2018, the Australian Government adopted an 'opt-out' strategy to increase participation in My Health Record (MHR), the national digital patient record system. Opt out was rationalised through discourse on the universal right to health. Media controversy ensued due to privacy fears, security and commercial exploitation of patient information. LGBT community organisations warned that people with complex health needs should consider their privacy and legal situation when deciding whether or not to opt out of MHR. With reference to the health needs of sexuality and gender diverse people, we examine MHR's rights universalism, possessive individualism, and state-based rationalisation of health governance. MHR hails all but no-one in particular, erasing diversity and straightwashing data medicine. It is a technological solution to state-based imperatives for health governance, an emphasis that does not serve minority communities or address health needs that attract stigma and prejudice. We counterpose these effects with citizenship framings seated in critical approaches to data assemblages and sexuality and gender diversity. We suggest ways in which data medicine, of which MHR is but one example, can be made more relevant and effective for individuals and communities whose healthcare is poorly served by mainstream health systems.
This article contributes to ongoing scholarship examining how drug investment and development shape medical and psychiatric classification. Whereas scholars have largely explained pharmaceutical development and expansion in terms of unidirectional flows of power from drug companies and medical experts, this article demonstrates a more dynamic process. Drawing on an in-depth case study of a series of pediatric clinical trials in the 1960s that led to the pairing of psychostimulants with hyperactive patients, it is argued that the dominant description of psychostimulants as attention-enhancing drugs and the profile for attention-deficit/hyperactivity disorder (ADHD) emerged in tandem through a recursive process in a series of randomized-control trials (RCTs). To make sense of this, pharmaceutical compounds are treated as what Ian Hacking calls an ‘engine for making up people.’ While Hacking describes pharmaceuticals in the context of medicalizing and normalizing people, this article demonstrates how drugs also interact with human kinds in ways that modify both over time. Finally, the key empirical takeaway of this article is a contribution to our understanding of the emergence and stabilization of what we now call ADHD.
Dempsey, Nordqvist and Kelly’s recent publication in BioSocieties highlights the complexity of disclosure in donor conception, which is legally, ethically, and morally challenging. However, contemporary society means that donor-conceived people’s awareness of their conception history can no longer be controlled by their parents. Late, accidental, and non-parent disclosure is becoming more prevalent and can be distressing. Research has consistently found that openness in donor conception families from an early age is optimal, and that disclosure positively impacts rather than threatens family relationships. Despite this, disclosure can be difficult for parents, particularly if they perceive an unsupportive social context. Both donor conception and adoption literature has found more positive outcomes among disclosing families compared to non-disclosing families and interestingly, parents who have chosen to disclose have not reported regret. This response briefly discussed these important considerations and also notes some instances of inaccurate reporting and misleading information in their article.
A Alexis Rockman, The Farm, 2000, oil and acrylic on wood panel, 243.84 cm × 304.8 cm. B Michael Wang, Differentiation Series, 2012, series of paintings, Primetime Gallery, New York, NY. Here, clear differences between the pictorial elements used to build a pure visual metaphor, and the abstract composition produced as a result of a processing a metaphor based on real operational processes of a non-biological system. But at the end, both examples have been shown in a traditional canvas with a static medium such that they cannot be categorised as bio artworks
A Alexander Fleming, bio sketches, 1930, Alexander Fleming Laboratory Museum (Imperial College Healthcare NHS Trust). B Nathan Shaner, San Diego beach, 2006, palette of bacterial colonies expressing fluorescent proteins, the lab of Roger Tsien. C Michael Shen, Skyline of New York City, 2016, printing nanodroplets containing yeast onto a large agar plate, NY. D Adam W. Brown, Origins of Life, 2015, generative installation. E Ani Liu, 2017, Spermatozoa, interactive-generative installation
A MIT’s new-media research team, Amino Acid Synthesizer, 2019, interactive bio-system manipulated by a mobile application. B Pierry Jaquillard, ACGT, 2018, interactive-generative interface. C MIT’s new-media research team, Cello, 2016, DNA circuits controlled by an interactive-generative interface
Since its emergence, bio-art has developed numerous metaphors central to the transfer of concepts of modern biology, genetics, and genomics to the public domain that reveal several cultural, ethical, and social variations in their related themes. This article assumes that a general typology of metaphors developed by practices related to bio-art can be categorised into two categories: pictorial and operational metaphors. Through these, information regarding several biological issues is transferred to the public arena. Based on the analysis, this article attempts to answer the following questions: How does bio-art develop metaphors to advance epistemic and discursive agendas that constitute public understanding of a set of deeply problematic assumptions regarding how today’s biology operates? Under the influence of today’s synthetic biology, could bio-media operationally reframe these epistemic agendas by reframing complex and multi-layered metaphors towards post-metaphoric structures? Finally, what are the scientific, cultural, and social implications of reframing?
A prescription used in the provider-assisted PrEP access model (Print with permission). Besides stating the drug prescribed, the prescription also contains a detailed report of the PrEP user’s laboratory test results. It lists the PrEP user’s test results for HIV, hepatitis B (HBsAg), the alanine aminotransferase test (ALT; for liver function), and creatinine (for kidney function). Such information, which is stated according to a transparent protocol of standardized medical language and measures, indicates a person’s health condition and eligibility for taking PrEP. It provides the basis upon which medical professionals in Taiwan and Thailand can proceed with the necessary medical treatment
PrEP Taiwan’s health campaign. This image is of a PrEP Taiwan Facebook page announcement of a music festival, illustrating the emergence of PrEP services in gay circuit parties. In introducing the event, the aesthetic expression further connects HIV service to gay circuit party. Its contradictory features demonstrate the extent to which the antiretroviral drug is an object of recreation (Translation of the campaign text: MEGA TAIPEI 2018, the biggest gay party, is around the corner. Globally famous music DJs and gogo boys will be celebrating the Dragon Boat Festival with you. During the party, you also want to play safe. Pre-order PrEP now and enjoy up to a 550 NT discount from Order with our representatives onsite to enjoy a discount up to NT1,050.)
Peter’s Grindr profile with identifiable personal data redacted (Printed with permission)
The global implementation of pre-exposure prophylaxis (PrEP)—a HIV prevention medicine—has evoked new hopes of ending AIDS. In 2016, a group of Taiwanese and Thai doctors and AIDS advocates initiated a PrEP delivery online platform to assist gay Taiwanese men to access the less expensive, generic versions of PrEP in Thailand. Drawing on science and technology studies, this article investigates how gay men’s bodies and sexualities and PrEP’s promise of ending AIDS become intertwined with the political and cultural economy of governmental regulation, pharmaceutical innovation, and personal mobility and pleasure. Building on the ethnographic fieldwork conducted in Taiwan and Thailand, it scrutinizes changing definitions of sexual health and surplus values of PrEP in two intertwined social settings: One is that of Taiwan’s online PrEP delivery system, which mediated between the top-down biomedical regulation of the pharmaceutical industry and Taiwanese state, and the other one is the transnational commercial transitions, which mediated through commercial ventures and individual recreational and consumer activities. By moving across various social landscapes, the article not only acknowledges the constraints put upon the individual by processes of commodification but also recognizes the possibilities and potentialities that are enacted by laypersons’ desires and migratory practices.
Current ‘healthy’ food knowledge revolves around characterizing food by its purported direct, causal effects on the body that ingests it, following a biomedical approach informed by nutritionism (Scrinis, Nutritionism: the science and politics of dietary advice. Columbia University Press, New York, 2013). As long as the focus is on the effects given foods or nutrients have on the ingesting body, a whole array of other effects that produce differentiated bodies beyond ingestion processes receive little attention. I draw on Grossberg (We got to get out of this place: popular conservatism and postmodern culture. Routledge, New York, 1992)’s notion of “effectivities” as a way of taking into account the heterogeneous ‘effects’ that ‘healthy’ food—as a discursive construct and a material object—has, and which occur in different realms (economic, political, agricultural, interspecies, health-related). Using the avocado as a means to illustrate my broader theoretical argument, I contend that ‘healthy’ foods’ effectivities can be observed in how they materialize in differentiated—here racialized—bodies. This raises the key question that permeates the critical stance of this article: whose health matters when it comes to defining ‘healthy’ food?
Study scheme of the Silver Santé Study. The Silver Santé Study combines two clinical trials: Study 1 SCD-Well, Study 2 Age-Well. Age-Well consists of two studies: Study 2A is an observational study with expert meditators, while Study 2B is an RCT with healthy elderly adults who participate in a meditation intervention, an English intervention or a passive control group. The scheme was adapted from public communication materials published on
Study scheme of the Age-Well clinical trial with 21-month follow-up examinations. The scheme visualises the periods of participant recruitment, data acquisition (baseline, follow-up after the 18-month intervention, and follow-up 21 month after baseline) and study interventions, which all started at different points in time in the three study cohorts. It is a modified version of a figure presented during an online European consortium meeting of the Silver Santé Study, 12th–13th of October 2020
Mindfulness and compassion meditation is a popular lifestyle intervention in randomised controlled clinical trials (RCTs), which examine its efficacy to ameliorate health and well-being. Studying meditation in an RCT poses the challenge of standardising an intervention that relies on a mix of people, skills and activities. This article describes how, in meeting this challenge, researchers engage in diverging knowledge-making practices. It draws on praxiographic inquiry in an RCT on the effects of meditation compared to a foreign language training on healthy age- ing. To analyse normative dimensions of knowledge-making practices, the concept of ‘epistemic goods’ is introduced. Researchers juggled partly incoherent epistemic goods—internal validity, social relevance, assessing efficacy, attending to qualitative effects, objectivity, trained judgment—and resolved tensions between them. Strategies to respond to unexpected events in the research process were: reinterpreting the study protocol, caring informally while playing by formal rules and adjusting the procedure of a study task. Analysing epistemic goods and strategies that make them coexist is relevant to problematise what counts as evidence in evidence-based medicine. Instead of evaluating knowledge by reference to a ‘gold standard’, evidence claims should be placed in the context of their production to evaluate them on their own terms.
The last two decades have seen an exponential growth in the consumption and prescription of psychostimulants for the treatment of attention deficit hyperactivity disorder (ADHD) worldwide. While much has been said in the literature about the medicalization and globalization of ADHD, comparatively less is known about how these processes play out on the ground and outside English-speaking countries, where psychostimulants have become the first-line treatment for ADHD. By combining historical and clinical ethnographic research, this article charts the transnational histories and everyday lives of psychostimulants in Portugal at the nexus between what I term processes of medical globalization and social localization. It explores how international medical standards and pharmaceutical regulations converged with local prescribing trends and sociomaterial contingencies that placed this small Southern European country among the top 20 world consumers of methylphenidate. Following a methylphenidate shortage and the social explanations of clinicians, this exploration also shows how the dissemination of pharmaceutical sales and prescribing data by the media triggered a public––and increasingly politicized––debate on psychostimulant drug treatments. More broadly, this article illuminates how psychopharmaceuticals are circulated, contextualized, marketed, and modulated in their journey and it advances a relational and processual understanding of their shifting, multiscalar configurations.
This article takes the phenomenon of phantom limb pain (PLP), and a therapeutic technology designed to treat it, as springboards to critically consider a transformation: from deeply subjective experiences into quantitative data. Drawing upon ethnographic fieldwork on neuroprosthetic development, I examine an international clinical trial coordinated in Sweden using neuromuscular activation, machine learning, and virtual reality to treat PLP. I excavate the trial’s underlying fundaments and tools, tracing how they define, produce and record changes in an individual’s pain along the course of treatment, a process I call the ‘datafication of pain.’ Moving beyond the representational problematic of pain as simultaneously subjective experience and object of medical intervention, I ask: What gets left out, in this process of datafication? And what gets created in the void it leaves? I argue that the experimental paradigm of datafication elides certain key dimensions of pain itself, particularly its relational dimensions, and surfaces new pain-experiences in-situ. The stakes of this elision and surfacing not only impact the data produced, but also the ethics of actual lived, embodied experiences of pain itself. In leaking out of the experimental apparatus, the excess of pain becomes an artifact of the experimental process, as opposed to merely its object. This article examines the relational dimensions—of both the experimental process and phantom limb pain at large—elided by the data-gathering apparatus itself.
Flows and entanglements of biological, physical and digital entities in making a human induced pluripotent stem cell line
The BMDAC processor’s checklist from the StemBANCC cell line order form
The concept of bio-objectification describes how the ‘raw materials’ of living cells and tissues are subject to both technical manipulations and ontological transformations to produce novel ‘bio-objects’ such as cell lines and transgenic animals. Bio-objects are conceptually fluid, but also subject to literal circulation through biobanks and repositories. Making bio-objects mobile means producing them in such a way that they are capable of travelling across jurisdictions, institutional boundaries, and of moving between public and private sectors. This paper uses one particular bio-object –the human induced pluripotent stem cell (hiPSC), and a particular context, a European consortium dedicated to creating an open access repository of hiPSC- to explore what making mobilisable bio-objects entails. The bio-object not only has multiple strands of identity- legal, ethical, political, technical- but this identity is distributed across, and inscribed in, a variety of paper documents, digital records, as well as the biological material. Making bio-objects mobile means putting these heterogeneous components into circulation, which can entail travel through different infrastructures and at different speeds. Moreover, contemporary legal and ethical requirements for the use of human biomaterials require the formation of durable connections that tie bio-objects to places and persons of origin as a condition of mobility.
Mitochondria, the organelles providing the cell with energy, have recently gained greater public visibility in the UK and beyond, through the introduction of two reproductive technologies which involve their manipulation, specifically 'mitochondrial donation' to prevent the maternal transmission of inherited disorders, and 'Augment' to improve egg quality and fertility. Focusing on these two 'Mito-Technologies' and mobilising the conceptual framework of "bio-objectification", we examine three key processes whereby mitochondria are made to appear to have a life of their own: their transferability, their optimisation of life processes and their capitalisation. We then explore the implications of their bio-objectification in the bioeconomy of reproduction. Drawing on publicly available material collected in two research projects, we argue that mitochondria become a biopolitical agent by contributing to the redefinition of life as something that can be boosted at the cellular level and in reproduction. Mitochondria are now presented as playing a key role for a successful and healthy conception through the development and promotion of MitoTechnologies. We also show how their "revitalising power" is invested with great promissory capital, mainly deriving from their ethical and scientific biovalue in the case of mitochondrial donation, and from the logics of assetisation, in the case of Augment.
Picture from the All of US research program website captioned ‘the future of health begins with you’ ( accessed 28 July 2020)
This paper focuses on Precision Public Health, described in the scientific literature as an effort to broaden the scope of precision medicine by extrapolating it towards public health. By means of the 'All of Us' (AoU) research program, launched by the National Institutes of Health in the U.S., Precision Public Health is being developed based on health data shared through a broad range of digital tools. PPH is an emerging idea to harness the data collected for precision medicine to be able to tailor preventive interventions for at-risk groups. The character of these data concern genetic identity, lifestyle and overall health and therefore affect the 'intimacy' of personhood. Through the concept of biological citizenship, we elucidate how AoU and its recruitment tactics, by resonating 'diversity', at the same time appeal to and constitute identity, defining individuals as 'data sharing subjects'. Although Precision Public Health is called for; the type of bio-citizenship that is enacted here, has a particular definition, where participant recruitment focuses on 'citizenship' in terms of empowerment (front), it is the 'bio' prefix that has become the main focus in terms of research. i.e. biosubjectivities vs biocapital. This raises the question whether the societal challenges that often underlie public health issues can be sufficiently dealt with based on the way 'diversity' is accounted for in the program. We suggest that the AoU still risks of harming underrepresented groups based on the preconditions and the design of the program. 2
Precision medicine (PM) has become a buzzword in global scientific and medical circles ever since the United States National Research Council 2011 report and the Obama Administration’s unveiling of its PM Initiative in 2015. In response in 2016, the Chinese government pledged $9 billion USD to PM research in the coming years and has designated PM as a key projects in various national plans. While promises of PM in China has similarities to those found in the U.S. and elsewhere, the way in which PM is anticipated stems from an imagination of the Chinese public as separate from the processes of scientific work and policymaking. Based on an analysis of documents and interviews with researchers and entrepreneurs in PM, this paper identifies aspects of the Chinese sociotechnical imaginary of the public and delineates three strands of anticipatory discourse used to galvanize support for PM in China: anxieties over demographic and developmental transitions, unlocking innovation in the “new normal” of slowing economic growth, and techno-nationalist competitions between the U.S. and China.
Trans medicine has historically naturalized a heterosexual binary model of gender by treating variation as aberrant. Gender dysphoria, the current psychiatric diagnosis that often facilitates trans medicine, is represented by mental health experts and LGBTQ groups as a superficial semantic shift in this tradition. Based on in-depth interviews with experts who crafted gender dysphoria for the fifth edition of the Diagnostic and Statistical Manual (DSM-5) in 2013 and archival study of the experts’ research process, I find far more than semantics at stake. Because experts had an imperative for evidence-based revisions to the DSM-5 and an underdetermined research based on gender identity development, their revision affirms gender variation as natural and non-pathological. Gender dysphoria is maintained as a mental disorder because experts insist on its importance for the institutional legitimation of trans people, not because gender variation is understood to be pathological. This move toward treating gender variation as a flexible spectrum of illness and wellness required a new scientific interpretation of evidence. This interpretation (1) finds underdetermined research to be credible evidence of natural variation and (2) applies this variation simultaneously to traits (like gender) and also to health status. Consequently, natural variation becomes a scientific finding.
depicts a citation network of studies that assess population differences in testosterone. Nodes represent studies while ties represent each time a publication uses another study in the network to enact a population-specific (i.e., racialized) claims about testosterone. The size of each node corresponds to the number of times the article has been cited by other studies in the sample. Nodes shaded light gray represent publications that find null results when comparing populations. Nodes shaded in dark gray represent mixed results. Nodes shaded in black represent studies that show clear differences in testosterone when populations are compared. Nodes that are white align with studies that were cited as evidence for population differences in testosterone, despite not offering any empirical evidence to support such claims
a, b, c, and d show the evolution of the citation network across for time periods (1966–1989, 1966–1999, 1966–2009, 1966–2017). The shades of the nodes mirror those in Fig. 1 (light gray nodes are null results, dark gray nodes are mixed results, black nodes are studies that find clear differences, and white nodes are non-evidence) and the size of the nodes correspond to the citation counts within the given time ranges. Node labels and notes were selectively applied to supplement the results reported in the main text. e depicts the sex/gender of participants studied throughout the full network (1966–2017) with light gray nodes signifying studies conducted on men, dark gray nodes linking to studies on women, and black nodes corresponding to studies conducted on children or mixed samples of men, women and children. f plots the number of articles in my sample that were published in each year from 1966–2017
While feminist science studies scholars have documented the misleading and dangerous implications of reducing testosterone to a ‘sex hormone,’ few studies have explored how testosterone is used to racialize populations in and beyond scientific research. In this article, I conduct a content analysis of 149 studies that evaluate population differences in testosterone. Despite widespread claims that testosterone varies between racial groups, my analysis of this literature provides scant evidence to support these proclamations, undermining the notion that testosterone contributes to racial differences in biomedical and biosocial outcomes. To supplement these findings, I use network analysis to visualize study outcomes as a citation network and trace racial differences testing in testosterone research from early twentieth century eugenics research to the contemporary ‘gold-standards’ used by scientists today. Lastly, I propose three theoretical mechanisms—ambiguity, absence and data recycling—to help explain how the racialization of populations is perpetuated in this context. Together, these mechanisms provide a basis for STS scholars to better understand how researchers enact population differences across different scientific contexts.
Health data can contain sensitive information. People who consult a doctor seek help on issues that matter to them: they typically expect some form of confidentiality. However, the notion and practices of confidentiality have changed dramatically over time. In this article, we trace the history of confidentiality in the Danish healthcare system, which has one of the world’s most integrated patient information infrastructures. Building on an analysis of legal and political documents dating back to the late seventeenth century, we show that confidentiality originated as a social phenomenon that helped build trust in healthcare professionals and gradually developed into an idiom of citizens rights. Lately, confidentiality has given way to more technocratic forms of data protection. As the political, legal and technological reality, which the idea of confidentiality once referred to, has radically changed, we argue that confidentiality has become what Ulrik Beck has called a ‘zombie category’—a notion that lives on even if its content has passed away. If confidentiality has become a zombie concept, we suggest it is time to discuss what may take its place so that patient interests are protected in the current political economy of health data.
Danish transplant coordinators handle all data and logistics involved with the removal and transfer of organs from the body of an organ donor into several recipients in other Scandinavian hospitals. This entails a wide range of data work, not only in relation to sudden organ donation cases, but also to documenting transplantations, providing feedback on donation outcomes, and facilitating the data needed by surgeons or other health professionals. This article investigates the data practices of organ transplant coordinators through the lens of diplomacy. Based on participant observation and interviews among Danish transplant coordinators, I focus on the cross-disciplinary relations and negotiations characterizing organ exchanges and show how datafication in itself is not enough to ensure smooth transplantation processes. Organ transplantation depends on the diplomatic social skills of the coordinator and the personal relationships between coordinators, surgeons and ICU staff. By bringing into focus the power of diplomacy, I conceptualize these structurally invisible efforts enabling organ donation and its associated data practices. Diplomacy enables us to recognize and understand the relational efforts and aspects of datafication, and the tremendous amount of work and social skill that go into producing and exchanging data in contemporary healthcare.
This article provides novel insights into how the values placed on patient-centred care in an in vitro fertilization (IVF) setting are shaped by discourses and practices on what counts as 'normal family life' in society at large. Based on an ethnographic study drawing on observations and interviews in a Norwegian IVF clinic, we show how patients place great value on interpersonal aspects of care and provision of information, factors well known in the literature on IVF and patient-centredness. To understand such values, we argue for the need to go beyond the clinical encounter and recognize how the experiences are influenced and shaped by the socio-cultural discourses on Norwegian family life, which shape the suffering of childlessness and its all-consuming effect on many infertility patients' lives making them not only value the outcome (a child), but also the treatment process itself. Amidst this social context and the expectations, hope and uncertainty surrounding IVF, the couples want their concerns addressed, to be informed and recognized as human beings, not just patients in an 'IVF factory'. In this sense, IVF users are modern patients, but more than that citizens in terms of considering the choice of IVF as taking part in Norwegian family life.
The UK response to Covid-19 has been unusually complex in its ever-shifting classifications of clinical vulnerability. By May 2020, 2.2 million people had been identified as ‘clinically extremely vulnerable’ (CEV) and were asked to ‘shield’ at home for over four months. To adhere to this strict guidance, they were enfolded within the patchy infrastructure of the ‘shielding programme’. However, membership of the ‘shielded list’ has changed—often without warning or explanation—through time and across space. Drawing on policy and evidentiary documents, government speeches, reports, press conferences and media analysis of Covid-19 coverage between March 2020 and April 1, 2021, this paper traces the shifting delineations of clinical vulnerability in the UK response across three lockdowns. It argues that the complexities and confusions generated by the transience of the CEV category have fed into forms of biosociality that have been as much about making practical sense of government guidance as a form of mutual support amid crisis. This uncertainty has not eased as restrictions have been relaxed and vaccines rolled out. Instead, tracing individual immune response has become a burgeoning industry as ‘the shielded’ navigate the uneasy demands of taking ‘personal responsibility’ rather than being protected by ‘the rules’.
In the 1970s, Latin America became a global laboratory for military interventions, the cultivation of terror, and ideological and economic transformation. In response, family groups and young scientists forged a new activist forensics focused on human rights, victim-centered justice, and state accountability, inaugurating new forms of forensic practice. We examine how this new form of forensic practice centered in forensic genetics has led to a critical engagement with Indigeneity both within and outside the lab. Drawing on ethnographic fieldwork with human rights activists and forensic scientists in Argentina, Guatemala and Mexico, this paper examines the relationship between forensic genetics, Indigenous organizing, and human rights practice. We offer the concept of ‘genetic syncretism’ to attend to spaces where multiple and competing beliefs about genetics, justice, and Indigenous identity are worked out through (1) coming together in care, (2) incorporation, and (3) ritual. Helping to unpack the uneasy and incomplete alliance of Indigenous interests and forensic genetic practice in Latin American, genetic syncretism offers a theoretical lens that is attentive to how differentials of power embedded in colonial logics and scientific practice are brokered through the coming together of seemingly incompatible beliefs and practices.
This paper examines the affinity ties of biological and familial whiteness in ART as evident in the 2014 Illinois Northern District Court case of Cramblett v. Midwest Sperm Bank—where a white mother filed a wrongful birth suit and sought legal compensation for the loss of perceived genetic similarity and giving birth to a ‘black’ child via donor insemination. Applying critical legal and critical race studies to the case and engaging its surrounding media, the paper considers what Cramblett can tell us about loss—as it is related to notions of value and property within an overarching system of racial capitalism. This paper considers how race, value, and property inter-articulated in Cramblett through notions of biogenetic relations and familial whiteness within the organization of family; how these ideas travel through to investments in life—and its continuation—as a form of racial property (for some); and what this case can tell us about broader operations of structural racism and the role of biomedicine (and law) within these operations. Ultimately, the paper shows that biogenetic affinity in ARTs condition life’s continuation in ways that resecure the disparities of racial capitalism.
This research explores how data from population genome projects in Southeast Asia are mobilized for identity formation beyond the lab. We compare two cases, the Vietnamese Genome Project which is funded by a Vietnamese private conglomerate and the Peranakan Genome Project in Singapore, to elucidate how the results from population genomic projects in Vietnam and Singapore are co-constituted with existing political and cultural narratives, as well as with varying notions of ‘Chinese-ness’. We find that while scientists in Vietnam use genomics to construct the Vietnamese as genetically independent from what is perceived to be an increasingly dominant Chinese geopolitical power, scientists and participants involved in the Peranakan Genome Project emphasize genomic and cultural mixing which happened between Southern Chinese migrants and the indigenous Malay population historically to distinguish from the rest of the ‘Chinese’ population in Singapore. The cases illustrate the different ways in which the actors involved in these two genome projects strategically differentiate and negotiate the ‘bio geo-body’ of the Vietnamese and the Peranakan in relation to the Chinese identity and nationalism, thereby revealing how genomics is intertwined with local and regional histories, culture and politics.
A compilation of images associated with SCD conferences in Brazil, 2011-2014
A compilation of images associated with SCD conferences in Brazil, 2011–2014
Patient activism organizations are formed around and seek legitimacy via both biological and biographical identities (Fassin, in: Theory Cult Soc 26(5):44–60, 2009). In the case of sickle cell disease (SCD) in Brazil, two different modes of suffering authenticate the lived experience—one is based on the disease state, the other is based on the ways in which racial inequalities and disadvantage contribute to its own suffering while also entangled with disease-based suffering. SCD is a rare genetic disorder that affects red blood cells and whose hallmark symptom is pain. This paper places an ethnographic focus on the failed mobilization of suffering by an organization leader in attempts to make claims for inclusion. The leader’s social and biological identities of mother, sickle cell trait carrier, middle class, and mulata disrupted biosocial cohesion. This disruption reveals a hierarchy of suffering, where some indices of suffering are delegitimized. This hierarchy illuminates how exclusion and representation work within a patient organization whose membership embody both physical and social distress.
In this contribution, we analyze the recently adjudicated Milica van Doorn rape and murder case. In this case, committed in 1992, no suspect could be identified until investigatory actors employed familial DNA searching in 2017. Crucially, familial DNA typing raised the possibility of ethnic and racial stereotyping and profiling, particularly against the background of the first case in which familial DNA typing was used in the Netherlands: the Marianne Vaatstra case, which from the start had been marred by controversy about the ethnicity of the unknown perpetrator. In our analysis, we show how criminal justice actors managed this potential for racialization through strategically mobilizing and carefully managing multiple collectives. Drawing on the notions of multiplicity and non-coherence, we show we do not only empirically trace the situated ethics and pragmatics of familial DNA research in this specific case, but we also develop a theoretical argument on the multiple and non-coherent character of race itself and its attendant ethical, political, and methodological possibilities and obligations.
How best are we to understand appeals to participate in a biomedical project that are based both on invoking shared racial identity, and on framing engagement as the clear moral course of action? Stem cell donor recruitment, which often focuses on engaging racially minoritised communities, provides useful insight into this question. This article proposes that it is not an essential mutual racial identity between the person asking and the person asked at play. Rather, it is the creative 'doing' of relatedness between people at the scale of race as well as family that coalesces into powerful appeals to participate. Through analysis of ethnographic, documentary and social media data, the paper argues that this work relies at least partly on framing donation as a duty of being part of a racialised community, which I describe here as an ethico-racial imperative, in which both race and responsibility become intertwined to compel participation in the biomedical project of donor registration. Supplementary information: The online version contains supplementary material available at 10.1057/s41292-021-00241-9.
What processes and conditions facilitate the emergence of animals as icons of national science? This essay tracks the (after)lives of a handful of non-human primates (NHPs) who, by virtue of their feats in the mid-twentieth century, dominated both scientific and public imaginaries of American space exploration. Although droves of life forms were launched into space, only a handful of NHPs claimed celebrity status. Conscripted during the early years of the Space Race, NHPs were employed as experimental subjects to test the dangers and viability of catapulting human life into orbit. This essay examines the values embedded in stories told about their feats and, later, in the commemorative projects mounted by science in the wake of their deaths. Of special concern are the processes at work—in the short and long durée—in the (re)making of lab animals as national icons. Space scientists regularly collaborated with Life magazine in fashioning stories of NHPs as willing collaborators in America’s efforts to conquer space. Associated decisions, actions, and representations expose the initial significance and, over time, the fragility of public sentiment as embodied in scientists’ efforts to shape narratives of the experimental use of NHPs as a moral project of lasting national significance.
While unequally resourced partners from the so-called global South are often considered ‘mere sample providers’ in larger international genomics collaborations, in this paper, we show how they strategically work to mobilize their role in a global system of tissue exchange to deliver services for local communities. We unpack how a prenatal diagnostic service for thalassemia in Pakistan emerged out of the maneuvering efforts of internationally connected Pakistani researchers. By tracing the distributed capacities that emerged and circulated as they set about improving medical genetics in Pakistan, we outline some key conditions that led to the establishment of the service: first, the scale of unmet needs that geneticists faced when collecting data as part of their research that made medical genomics a relevant field; secondly, joint efforts between researchers and physicians that were engaged with the challenge of decreasing disease prevalence through diagnostics and abortion; and finally, the ways in which international research collaborations helped generate resources to improve medical genetics in Pakistan. To understand how genetic research and medicine is currently being developed in Pakistan, we need to ethnographically re-center our analyses in ways that allow us to identify the resourceful ways in which researchers maneuvre to secure locally relevant outcomes.
In the 2000s, same sex partnership laws, new reproductive technologies, and legislation rendering lesbian couples and single women eligible for state-funded assisted reproduction with donated gametes in the Scandinavian nations has resulted in significant changes in family formation. Drawing on two separate qualitative studies, this paper scrutinizes Scandinavia’s alleged progressive LGBTQ politics by critically examining how ideas of kinship, race and nation shape ideas of ‘donor matching’ amongst queer parents in Sweden and Denmark. Through empirical analysis, we explore how the conditional invitation of queers into family making via state regulated assisted reproduction is entangled with racialised medical and commercial choices of donors that reflect historically specific ideas of race. In particular, we show how whiteness is framed as desirable and how being ‘racialised non-white’ is framed as a risk that ought to be minimised for children who are already considered ‘disadvantaged’ by being born into ‘queer’ families. Thus, we argue that contemporary queer reproduction is not only central to homonationalism, it can also be seen as a continuation of eugenic and biopolitical initiatives that have been central to the emergence of Scandinavian welfare states. We conclude by proposing further scrutiny of contemporary queer reproduction as a potential ‘white-washing’ technique to manage populations.
A model of entrepreneurial activism to address undone science
This paper describes CliniCrowd, a patient-designed, entrepreneurial, crowd-sourced citizen-science approach to evaluating mannitol—essentially, an orphan drug—as a Parkinson’s disease treatment. As such, CliniCrowd addresses ‘undone science’, and our paper contributes to the sociological literature thereon. Based on 38 qualitative interviews, fieldwork, and content analyses (2017–2020), we trace CliniCrowd’s background and rationale. We: discuss undone science and its wider contexts; present earlier iterations of citizen-science and treatment activism; examine CliniCrowd’s application of crowd-sourced citizen-science to address undone science around ‘orphan drug’ treatment for Parkinson’s disease; explore how CliniCrowd has evolved, and re-framed its work, since its founding; ponder its future; and consider whether their approach can guide future citizen-science treatment research. Our paper contributes to the existing literature in four ways. First, we focus on medical treatment issues, an under-studied area of undone science. Second, we highlight orphan drugs as both major source of, and fruitful area for research on, undone science. Third, we describe CliniCrowd’s pragmatic, entrepreneurial—rather than the more common activist—citizen-science approach to addressing undone treatment science. Finally, from our data on CliniCrowd we distil a preliminary model for future treatment activism around undone science.
In the last few decades, assisted reproductive technologies (ARTs) have become increasingly transregional and transnational, often involving travel within or between countries or even continents. Until recently, the global ART industry was marked by so-called ‘reprohubs’—places (such as southern California, Dubai, Anand, and Mumbai) specializing in the provision of reproductive services. While reprohubs continue to exist, in the last few years, many have splayed out, transforming into something more akin to webs that encompass, but go beyond these hubs. These webs show a unique dynamic capability to tighten, entangle, or extend in reaction to local and global changes, a characteristic which became particularly obvious during the global Covid-19 pandemic. In this paper, we propose conceptualizing this new dynamic capability as ‘reprowebs’—an approach that adds a new dimension to the existing conceptualization of reproductive travel and helps us to better understand current developments in the global ART industry.
Top-cited authors
Nancy Cartwright
  • Durham University
Natasha Schull
  • New York University
Carlos Novas
  • Carleton University
Nikolas Rose
  • King's College London
Francisco Ortega
  • Catalan Institution for Research and Advanced Studies