More than sample providers: how genetic researchers in Pakistan mobilized a prenatal diagnostic service for thalassemia

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.

Legitimate suffering: a case of belonging and sickle cell trait in Brazil

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.

Keeping race at bay: familial DNA research, the ‘Turkish Community,’ and the pragmatics of multiple collectives in investigative practice

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.

Reprowebs: a conceptual approach to elasticity and change in the global assisted reproduction industry

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.

To wish you well: the biopolitical subjectivities of medical crowdfunders during and after Aotearoa New Zealand’s COVID-19 lockdown

Crowdfunding platforms apply a marketized, competitive logic to healthcare, increasingly functioning as generative spaces in which worthy citizens and biopolitical subjects are produced. Using a lens of biopower, this article considers what sort of biopolitical subjectivities were produced in and through New Zealand crowdfunding campaigns during the 2020 COVID-19 lockdown. It focuses on a discursive and dialogical analysis of 59 online medical crowdfunding campaigns that were active during lockdown and chose to mention the pandemic. These pages pointed to interrelated biological, social and economic precarities, speaking to questions about how citizens navigate uneven needs during uncertain times. Findings showed that crowdfunders referred to the pandemic in order to narrate their own situation in culturally coherent ways and to establish context-specific relations of care. This included contextualising their needs through establishing shared crisis narratives that also made the infrastructural contexts of healthcare visible and performing relational labour in ways that aligned with nationally specific affective regimes. By highlighting their own vulnerability, crowdfunders strategically mobilised broader lockdown discourses of self-sacrifice on behalf of vulnerable people. In this way, New Zealand’s lockdown produced subjectivities both drawing on wider neoliberal moral regimes and specific to the nuanced and emergent moral systems of pandemic citizenship.