BioSocieties

Machin, Laura L.; Cooper, Jessie; Dixon, Heather; Wilkinson, Mark

doi: 10.1057/s41292-020-00219-zpmid: N/A

The UK government and NHS Blood and Transplant have introduced a number of policies and organisational changes to the organ donation system following the 2008 recommendations of the Organ Donor Taskforce, which aim to increase the number of available donor organs and tackle transplant waiting lists. However, little is known about how these policy and organisational shifts influence how healthcare professionals experience delivering end-of-life care in the context of organ donation. In this paper, we examine ICU, Emergency Medicine, and Theatre staff’s experiences of organ donation in one NHS Trust following the 2008 changes. We focus upon their decision making when caring for patients at the end of life to highlight the tensions between health professionals' beliefs-in-principle about organ donation and their everyday moral and common sense practices when caring for patients at the end of life. We explore how we might understand and interpret this ‘troubling’ of organ donation through applying the concept of ‘conscience’, and consider whether a conscientious objection around organ donation could exist.

Machin, Laura L.; Cooper, Jessie; Dixon, Heather; Wilkinson, Mark

doi: 10.1057/s41292-021-00226-8pmid: N/A

In the original publication of the article, the second author's affiliation was published incorrectly and the correct affiliation is given in this correction.

Langstrup, Henriette; Moreira, Tiago

doi: 10.1057/s41292-020-00221-5pmid: N/A

Patient-Reported Outcome (PRO) data are being widely mobilised as a means to implement clinical and governance decision-making systems based on measurement of "what matters to patients". Little is known, however, of how these—datified and calculative—versions of patients' embodied experiences become integrated in healthcare systems to achieve clinical, managerial and political goals. Drawing on data collected on a Danish national initiative to establish a questionnaire bank and a technical infrastructure for PRO data, this paper explores the epistemic and moral tensions of emerging infrastructures for patient-reported data. Our data reveals that those involved in crafting and developing the Danish PRO system seek to encode ‘patient experience’ in the Danish healthcare system by infrastructuring for the clinic, by infrastructuring for the organisation, and by infrastructuring for participation. The infrastructuring efforts in each of these domains involve tensions as the emerging phenomenon of PRO rubs up against existing ways of working clinically and of enhancing and evaluating the quality of clinical care. Thus, while we share critical social science concern about standardisation of patient experience, we show here how those concerns are already pragmatically present in the infrastructuring efforts that patients, clinicians and administrators engage in.

Datta Burton, Saheli; Kieslich, Katharina; Paul, Katharina Theresa; Samuel, Gabrielle; Prainsack, Barbara

doi: 10.1057/s41292-020-00220-6pmid: N/A

Despite longstanding attempts to conceptualise and measure value in biomedicine and healthcare, there is no single agreed definition of what value is. Instead, and as such, value is often taken as given or constructed in economic terms. In this paper, we argue that taking the meaning of value as given, or reverting to technocratic or economic dimensions of value, obscures the non-technical and societal dimensions of value construction and operationalisation in healthcare and biomedical practices. Through a comparative study of five cases of biomedicine and healthcare, we aim to bring out the socioeconomic and political processes that make a thing valuable for society and its implications. Our contention is that a clearer understanding of what makes something valuable (or not) is the first step towards what socially reflexive and responsible valuing of biomedicine and healthcare ought to be.

Smith, Robert D.

doi: 10.1057/s41292-020-00223-3pmid: 33688371

This article traces the history of India’s first tertiary cancer hospital, Tata Memorial Hospital (TMH). TMH was originally conceived in 1932 as a philanthropic project by the Tatas, an elite Parsi business family in Bombay. The founding of TMH represented a form of philanthro-capitalism which both enabled the Tatas to foster a communal acceptance for big businesses in Bombay and provide the Tatas with the opportunity to place stakes in the emerging nuclear research economy seen as essential to the scientific nationalist sentiment of the post-colonial state. In doing this, the everyday activities of TMH placed a heavy emphasis on nuclear research. In a time when radium for the treatment of cancer was still seen as ‘quackery’ in much of the world, the philanthro-capitalist investment and the interest in nuclear research by the post-colonial state provided an environment where radium medicine was able to be validated. The validation of radiotherapy at TMH influenced how other cancer hospitals in India developed and also provided significant resources for cancer research in early-mid twentieth century India. Ultimately, this article identifies ways in which cancer comes to be seen as relevant in the global south and raises questions on the relationship between local and global actors in setting health priorities.

Kelz, Rosine

doi: 10.1057/s41292-020-00224-2pmid: N/A

Taking the early tissue culture experiments of Alexis Carrel in the 1910s–1930s as its example, the article explores the relationship between advances in biotechnological control over living matter and a holistic ontology of life, which stresses the temporal specificity of living things. With reference to Henri Bergson, Carrel argued that physiological time depends on an organism’s relationship to its milieu. By developing a laboratory apparatus and culture media, new objects of investigation could be made to live outside the organism and be brought to behave in novel temporal ways. In difference to recent biotechnological advances, like for example genome editing, which seek to ‘engineer’ living organisms by rebuilding them from their DNA up, then, early twentieth century interventionist laboratory practices were often linked to an understanding that biological plasticity results from organismic complexity and interactions between organism and milieu. These notions contributed to shaping laboratory apparatuses and techniques; they also helped to establish an understanding of environmental control that would allow for the production of novel ‘living things’.

Kirsh, Nurit; Hashiloni-Dolev, Yael

doi: 10.1057/s41292-021-00228-6pmid: N/A

Until recently, in rabbinic discourse as well as Israeli state policy, Jewish identity was not reckoned via genetics. While academic studies looked for genetic similarities among Jewish communities, these similarities did not determine Jewishness or state policy. This article is the first study spotlighting the novel use of mtDNA testing in order to determine the Jewishness of Israeli citizens who immigrated to Israel from the Former Soviet Union (FSU) 1990 onward. These tests offered by the Israeli State Rabbinate are accompanied by heated political and religious wrangles, in particular between leaders of the Ultra-Orthodox Jewish community and the political party claiming to represent immigrants from the FSU. We aim to understand this current debate on determining Jewishness by mtDNA. We examine the reciprocal relationship between science, religion, communal identity and state policy, and question the possible social implications. In contrast to claims that the change in Jewish’ definition is guided by science and technology, we argue that this change is dictated primarily by specific historical and socio-political circumstances. Furthermore, enthusiasm or rejection of the use of mtDNA for Jewish recognition depends on inclusive or exclusive ideologies, not on the indecisive content of science or religion themselves.

Sparrow, Robert; Mills, Catherine

doi: 10.1057/s41292-021-00229-5pmid: N/A

While CRISPR/Cas9 has become a lightning rod for fears about humanity’s increasing capacity to engineer biological life, the mainstream of Anglo-American bioethics struggles to discern much wrong with genome editing of human beings in vitro. In this paper, we analyze the notion of biopolitics and consider what contribution it may make to debates on genome editing. We disambiguate the different senses of two key terms: ‘biopolitics’, and ‘life’, and try to show how particular authors in the biopolitics literature draw on and emphasize different versions of these concepts. In the final section of the paper, we venture some suggestions as to the contribution that a number of these approaches might make to moving beyond a focus on risk and individual liberty to address the urgent bioethical questions surrounding the use of CRISPR/Cas9 to edit the human genome.

Lawless, Christopher James

doi: 10.1057/s41292-021-00231-xpmid: 33968156

This article critically examines UK biometric policymaking by charting the bodies identified by the 2018 Home Office Biometric Strategy as playing key roles in the oversight of biometric data used in law enforcement and other related functions. The article argues that oversight actors are embedded in biometric imaginaries promoted by the UK Home Office and the devolved Scottish administration. By mapping oversight of UK biometrics policy together with developments in Scotland, the article challenges sociotechnical imaginaries studies which assume the power of national governments to project dominant, cohesive and instrumental visions. The article peels away that image to reveal UK biometric policy as located within a patchwork in which embedded commissioners, regulators and advisors challenge biometric imaginaries through interpretive flexibility and standpoint. By identifying technical, operational, legislative and ethical issues, these actors challenge the UK government imaginary and act as channels of critique between it and wider stakeholder communities. The article further challenges assumptions concerning the cohesion of national imaginaries by highlighting a diverging approach to biometric governance in Scotland. The article uses these observations to sketch a means to further characterise the notion of the biometric imaginary and to address biometric policymaking more widely.

Dempsey, Deborah; Nordqvist, Petra; Kelly, Fiona

doi: 10.1057/s41292-021-00225-9pmid: N/A

Over the past two decades, there has been increasing demand for openness in policy and practice relating to donor-conceived families. With the benefits of openness now widely discussed, and often legally mandated, it is timely to explore the challenges families face in enacting openness when donor assisted conception is still a complex legal and social issue. Our premise is that the difficulties associated with enacting openness should be subject to at least as much scrutiny as the secrecy of past practices. To make our case, we draw on qualitative, socio-legal and sociological research with same-sex, sole parent and heterosexual donor-conceived families in the UK and Australia. We argue that exhortations to openness about donor conception ignore important relational considerations of families if they rely on a moral discourse that being open is the right thing to do, devoid of any context about how, when and by whom this is achieved. Demands for openness need to take into account the situated care relationships of family members, the timing of and manner in which information is imparted, and the fact that this information can fundamentally disrupt or transform the family lives of those to whom it is revealed.