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Since the 1950’s procuring organs for cadaveric transplantation has been based around a “gift of life” discourse, institutionalised through the carrying of donor cards/driving licence or registration on the NHS Organ Donor Register. Yet regardless of whether and how the deceased recorded their wishes to donate, their next-of-kin are always whether organs can be removed. Little is known about the reasons families give for refusing or agreeing to an organ donation request. In order to identify the circumstances in which an organ donation request is more likely to be accepted or refused by the family of a brain stem dead individual, semi-structured interviews were carried out in various areas of Scotland in order to ascertain donor and non-donor relatives’ beliefs, attitudes and experiences. The findings suggest that wider cultural beliefs embedded in society about the value of gifting, death and the body are brought to the specific context of an organ donation request. It is the interactions between these values and other factors, such as familial and hospital support and dynamics and the perceived value of the outcome from donation affects whether families will donate or not. The findings of such an investigation will have obvious policy implications for those interested in increasing the present UK organ procurement rate and can also inform debates about the merits of introducing alternative systems. However, a study of organ donation and transplantation can also provide the sociologist with a unique insight into several engaging areas of sociological interest: modern gift practices (including altruism and social exchange theory), the way meanings are constructed onto dead bodies by different groups, of how and when death is defined, and finally, can lead insight into an intricate relationship about how individuals’ view the relationship between personal, social and corporeal identity.

UK educational policies exploit interdisciplinarity as a marketing tool in a competitive educational world by building images of prosperous futures for society, the economy, and universities. Following this narrative, interdisciplinary science is promoted as superior to disciplinary forms of research and requires the training of future researchers accordingly, with interdisciplinary doctoral education becoming more established in universities. This emphasis on the growth of interdisciplinary science polarises scholars' views on the role of academic research between the production of knowledge on the one hand and knowledge as an economic resource at the other end of the spectrum. This research asks: what is the rationale behind the perceived value of interdisciplinary research and training, and how does it affect graduate students' experiences of their PhD? Based on a practice theory perspective for its suitability in generating insights into how university's social life is organised, reproduced and transformed, the doctorate is conceptualised as sets of interconnected practices that are observable as they happen. This current study, therefore, comprised two stages of data collection and analysis; the examination of documents to elucidate educational policy practices and an educational ethnography of an interdisciplinary doctoral programme. This study found interdisciplinary doctoral training is hindered by the lack of role models and positive social relationships, which are crucial to the way interdisciplinary students learn. Furthermore, it is argued that interdisciplinarity is sometimes applied to research as a label to fit with funders' requirements. Specifically, in this case, medical optical imaging is best seen as an interdiscipline as it does not exhibit true interdisciplinary integration. Further insights show that while interdisciplinarity is promoted in policy around promises and expectations for a better future, it is in tension with how it is organisationally embedded in higher education. These insights form the basis for a list of practical recommendations for institutions. Overall, interdisciplinary doctoral training was observed to present students with difficulties and to leave policy concerns unaddressed.

This mixed-method qualitative study examines debates surrounding the socio-ethical implications of human germline genome-editing (hGGE) technologies, focusing on how hybrid elite stakeholders' discursive and argumentative strategies have shaped the UK hGGE debate within the unique regulatory landscape of the UK. I utilise conceptual approaches from science and technology studies (STS) and ethics to explore how hGGE debates are architected through tools, such as the inclusion and exclusion of actors, rhetorical devices, and argumentative patterns. The thesis identifies multiple agorae in the UK where preparatory debates on hGGE occur, building upon approaches from NEST-ethics to produce a taxonomy of argumentative patterns employed by hybrid elite stakeholders in ethical discussions of hGGE. I argue that argumentative patterns identified - such as the creation of boundaries or the use of metaphors - are reified and stabilised by the agora. I conclude that these argumentative patterns contribute to the compression of UK hGGE debates in several ways, for example, by excluding various social actors and their viewpoints. The study describes hGGE as the latest in a series of biotechnology debates in the UK that encourage the liberalisation of embryo policy through a process whereby successive technologies are regulated, referred to as regulatory slippage. I argue that if steps are not taken to develop the quality of debate, hGGE may be legalised prior to comprehensive ethical discussion on the topic. I conclude by suggesting a series of practicable policy recommendations for improving hGGE debates.

Artificial intelligence's (AI) distinctiveness as a technoscientific field that imitates the ability to think went through a resurgence of interest post-2010, attracting a flood of scientific and popular expectations as to its utopian or dystopian transformative consequences. This thesis offers observations about the formation and dynamics of expectations based on documentary material from the previous periods of perceived AI hype (1960-1975 and 1980-1990, including in-between periods of perceived dormancy), and 25 interviews with UK-based AI specialists, directly involved with its development, who commented on the issues during the crucial period of uncertainty (2017-2019) and intense negotiation through which AI gained momentum prior to its regulation and relatively stabilised new rounds of long-term investment (2020-2021). This examination applies and contributes to longitudinal studies in the sociology of expectations (SoE) and studies of experience and expertise (SEE) frameworks, proposing a historical sociology of expertise and expectations framework. The research questions, focusing on the interplay between hype mobilisation and governance, are: (1) What is the relationship between AI practical development and the broader expectational environment, in terms of funding and conceptualisation of AI? (2) To what extent does informal and non-developer assessment of expectations influence formal articulations of foresight? (3) What can historical examinations of AI's conceptual and promissory settings tell about the current rebranding of AI? The following contributions are made: (1) I extend SEE by paying greater attention to the interplay between technoscientific experts and wider collective arenas of discourse amongst non-specialists and showing how AI's contemporary research cultures are overwhelmingly influenced by the hype environment but also contribute to it. This further highlights the interaction between competing rationales focusing on exploratory, curiosity-driven scientific research against exploitation-oriented strategies at formal and informal levels. (2) I suggest benefits of examining promissory environments in AI and related technoscientific fields longitudinally, treating contemporary expectations as historical products of sociotechnical trajectories through an authoritative historical reading of AI's shifting conceptualisation and attached expectations as a response to availability of funding and broader national imaginaries. This comes with the benefit of better perceiving technological hype as migrating from social group to social group instead of fading through reductionist cycles of disillusionment; either by rebranding of technical operations, or by the investigation of a given field by non-technical practitioners. It also sensitises to critically examine broader social expectations as factors for shifts in perception about theoretical/basic science research transforming into applied technological fields. Finally, (3) I offer a model for understanding the significance of interplay between conceptualisations, promising, and motivations across groups within competing dynamics of collective and individual expectations and diverse sources of expertise.

This thesis is fundamentally concerned with revealing the complex and nuanced interrelationship between collective and individual interests in health research, and the implications of this for optimising contemporary health research regulation (HRR). This task of optimisation can be characterised as a persistent preoccupation in the heath research arena, in that consideration of these interests can be located both in foundational international instruments that have shaped the course of modern health research regulation, as well as in contemporary instruments and guidelines. Nonetheless, the nature of human health research has been transformed since the post-World War II era, which has impacted both on how health research is conducted, as well as debates about what the regulation of this endeavour ought to look like. In this way, contemporary health research constantly challenges traditional regulatory structures that are underpinned by an increasingly outdated approach to individual and collective interests that are at stake. The regulatory system struggles to keep pace and this is particularly evident in relation to data-intensive health research. This thesis tackles these tensions head on. I propose that a new approach to HRR is required that is capable of engaging with the multiplicity of ways in which decisions about the conduct of health research might impact on our lives. More particularly, I argue that there is something about the quality of human health research that is focused on realising and promoting collective interests that builds on, but also goes beyond, the protection of individuals who contribute to that research, and that this must be reflected in the way that it is regulated. The solution I offer is the concept of 'publicness', as introduced and explored in this thesis. More specifically, publicness reflects the interrelationship between collective and individual interests, thereby drawing attention to the context in which this interplay takes place, as well as the implications of this relationship for HRR, both now and in the future. I identify three interlinked and overlapping facets of publicness: relationality, temporality and accountability. The analysis in this thesis deploys the tripartite framework provided by publicness in order to scrutinise several aspects of HRR. This serves to (i) reveal new insights in relation to existing concepts in HRR, namely the public interest, social value and social licence; (ii) identify how HRR can better account for the full range of interests in play throughout the research and data lifecycle, with a focus on temporal aspects of the research endeavour and the mutability and diversity of and within publics in HRR; and (iii) offer a reconceptualisation of the public interest that is better equipped to meet the realities and challenges of the contemporary health research environment. A case study, in relation to a high-profile and disputed transfer of identifiable NHS patient data from The Royal Free NHS Foundation Trust to Google DeepMind, reintegrates the preceding analysis to the contemporary data use landscape. This illustrates how publicness helps to optimise HRR by both elucidating 'lessons learned', and through the identification of positive steps that can support future data-sharing initiatives to better account for publicness. In these various ways the diagnostic and normative value of publicness helps to provide a new understanding of what is at stake in health research and its regulation, and to provide a basis to move beyond what already exists in the sub-optimal HRR ecosystem.

The dramatic drop of the fertility rate in Brazil, from 6.2 births per woman in 1960 to 2.5 in 1996, has been attributed to women's increasing use of sterilisation. Despite the fact that sterilisation was illegal, Brazil had the second highest rate in the world in 1996, at 40.1%. Political concerns regarding the abuse of the operation led to the legalisation of sterilisation in 1997 to provide regulation of the procedures. Subsequently, rates of reversible contraception have increased, and sterilisation rates dropped to 21.4% by 2013. Sterilisation in Brazil is thus a useful case study to examine how changing socio-legal contexts can influence experiences or understandings of this contraceptive technology. This research is based on semi-structured interviews conducted in 2013 with 35 women from a variety of socio-economic and ethnic backgrounds in Rio de Janeiro. This thesis is informed by a sociological perspective on health technologies that takes account of the social context and of lay users' views of their experiences. Several different domains of social life that have an influence on participants' understandings of sterilisation are thus examined, including: wider reproductive discourses, family and intimate relationships, the medical institution within which contraception is provided, and prior experiences of reversible contraceptive technologies. The thesis demonstrates the importance of examining sterilisation as a socially-mediated practice. At the institutional level, my analysis illustrates how women navigate the shifting ambiguous socio-legal context, as well as the systemic barriers to healthcare, when accessing sterilisation. The influence of intersections of gender, race and class are highlighted in this process, and is evident in women's experiences of family and intimate relationships. At the embodied and individual level, the significance of the design of contraceptive technologies is emphasised, as well as women's prioritisation of their own emotional and physical wellbeing and sexual pleasure. Furthermore, the analysis highlights how reproductive discourses intersect with cultural notions of family ideals and everyday practices, to influence both decisions about and understandings of sterilisation. Overall, the thesis illustrates how sterilisation is a socially mediated practice that varies dependent on macro contexts of cultural reproductive discourses, as well as institutional, interactional and individual levels.

Child growth reference charts have been used since the 1960s to assess children´s growth - enabling comparison of different population groups and the implementation of nutritional surveillance. In 2006, an important critical juncture occurred in the history of anthropometry and nutritional assessment, when the WHO released new growth charts for international comparison after promoting, since 1975, the use of the charts developed by the Centers for Disease Control (CDC) and US National Center for Health Statistics (NCHS). According to the WHO, these charts indicate how children should grow for the best health outcome in contrast to the NCHS/CDC charts that indicated how the average child grows. This shift from a descriptive to a prescriptive -and rather normative - approach allowed the WHO to state that all children in the world have the potential to grow and develop to within the same range of height and weight, thus implying that all children should develop in specific standardised ways, regardless of ethnicity, socioeconomic status and type of feeding. By 2011, approximately 125 countries had adopted the WHO charts for individual growth monitoring as well as the means of producing statistics for under- and over-nutrition, which would be used to assess and monitor a population's health status. This shift between charts has direct implications for how children's growth is measured and how malnutrition is assessed. The adoption of the WHO charts has immediate consequences for the calculation of underweight, overweight, stunting, and wasting prevalence. In this sense, the adoption of the new charts considerably changes the estimates to predict nutrition-related emergencies, the assessment of appropriate weaning practices, and the screening and monitoring of populations at risk or with growth deficiencies or excesses. In my doctoral research, I use Colombia as a case study to unpack how a standard developed by an international organisation is negotiated, adopted and constantly transformed once it is scaled down to a specific country. Using the theoretical approach to standards by authors such as Star, Bowker, Timmermans, Berg, and Epstein, in this dissertation I show how, far from being 'stable' and 'value-free' (as the World Bank would describe them), growth charts are political tools of measurement, charged with specific values regarding children's bodies. Given that Colombia had previously used the NCHS charts, this research explores how the WHO charts have been adopted within individual growth monitoring programmes in Colombia. I also describe how the change in charts has destabilised the production of under and over-nutrition indicators by national bodies, such as the Ministry of Health and the Instituto Nacional de Salud. My data includes twenty-eight interviews with policy makers, experts and civil servants who actively participated in the process of adopting and adapting the standards in Colombia at the national level; seventeen interviews with nurses and doctors; observation of 158 anthropometric assessments of children under five years old within six health facilities in the Caribbean region that were implementing a growth monitoring programme. By exploring how the WHO charts are interpreted and used in practice, this research contributes to the study of standards and standardisation as a field of study in its own right.

The forward march of biobanking creates the need for an alternative approach to biobank governance. Biobanking encourages medical advancement by making the conduct of health-related research more efficient, by minimising physical harms to participants, and by facilitating personalised medicine and greater understandings of disease. Nonetheless, its characteristics that distinguish it from general health-related research often give rise to many ethical and social issues. For example, multiple and unexpected uses of biobank resources can render conventional informed consent inadequate for safeguarding participants and maintaining public trust and confidence. Also, because the size of a biobank cohort is normally large, biobanking usually requires considerable management resources and this can mean that biobanks can likely be financially dependent upon for-profit entities. This dependency can cause concern among participants and publics about commercial exploitation. These issues suggest that a new approach to biobank governance is required to address them. Indeed, their complexity and the sheer longevity of biobanking itself also suggest that it is relatively feasible and coherent to address them by focusing on a relationship between participants and biobankers. This involves many aspects of interaction and reflects an element of continuity, which is crucial to biobanking success, as opposed to one-off measures. Consequently, with the aim of addressing issues that arise from biobanking, this thesis offers an analysis of the participant-biobanker relationship that can deal with these issues. Such a relationship constitutes an authentic research relationship in biobanking (“ARR”). Based on this premise, the main research question of my thesis is to ask: What form of research relationship is appropriate for effective and ethical biobanking practices? Three sub-questions are raised to solve this top-level research question. They start with a normative question of why the ARR proposed in this thesis is desirable for biobanking. The next sub-question asks what this ARR should look like from a conceptual perspective. For a practical respect on my proposals, the last sub-question concerns the ways in which the ARR can be fostered in practice. To address these research questions, my thesis first establishes the main characteristics of the proposed ARR as the fundamental notion thereof. These main characteristics are used to answer the first sub-question. For the second sub-question, the thesis suggests that the ARR should be based on the concept of partnership, as opposed to solidarity, mainly because partnership can exhibit the main characteristics of the ARR – as argued – and can also be prescribed in a governance manner. The thesis then uses partnership as a basis for proposing the key features of the ARR, which are deemed to be a conceptual framework for the ARR. To answer the last sub-question, the thesis uses this conceptual framework to propose a partnership model for biobank governance that can be used to develop the ARR in practice. My original contribution is to propose a novel approach to an ARR, and this ARR is based on the concept of partnership. In other words, my thesis argues that the pursuit of the ARR, which looks like a partnership relationship, is an important element of biobanking success. In this respect, my thesis is about a sociologically informed role for partnership in biobank governance. It also provides a nuanced epistemological grounding for a participant-biobanker relationship in both conceptual and practical ways. From a philosophical perspective, my thesis proposes an ethical framework for biobank governance that perceives partnership as a virtuous trait for biobankers and provides rules for acquiring this trait through biobanking practices. Notably, it is argued that this partnership is not – nor need it be – the legal paradigm of partnership, which fundamentally refers to for-profit business association. While law might have a role to play in facilitating the development of the ARR, it cannot prescribe the ARR nor should it attempt to do so.

With effect from 1st April 2005, UK law was amended such that gamete donors must now consent to their identity being released to their donor offspring, should they request it after the age of eighteen. This qualitative study investigates the views and experiences of those donating in this new context. Drawing primarily on twenty-four in-depth interviews with donors, supplemented by twenty staff interviews and observation in two fertility clinics, I examine how donors make sense of their role in relation to offspring, recipients and the wider community. I argue that donors make sense of their role as “biological” parents to offspring through creative reference to kinship repertoires, drawing on their own experiences of “doing family.” However, crucially, kinship connections are always qualified in some way to show that they are not quite family to donor offspring, and certainly not their “real” parent. Often this discursive work involved emphasising their relationship to recipients or the wider community (rather than offspring), framing the donation as a gift or a public act. In addition, donors drew on their kinship expertise to dilute, reshape or “re-route” their connection to offspring. Ultimately, this is a thesis about the limiting work involved in “doing kinship.” I demonstrate that donors did this limiting work in highly creative ways, not restricted to forgetting or ignoring connections. Instead, I show that not constructing kinship claims can be as active a process as making them.

This thesis presents an in-depth ethnographic mapping of deceased donation in a Catalan hospital. A unique site in terms of leading edge technoscientific practices, high rates of donation and its consolidated specialised team of transplant coordinators (TCs). The thesis situates donation as an embedded medical practice and traces the practicalities and specificities of making donation a possibility at the hospital. The empirical accounts offer a distinctive contribution that complements and challenges existing social sciences literature about donation. The latter have predominantly focused on donation as a controversial practice through highlighting the emotional experiences of donors’ families and individual medical practitioners involved. This empirical investigation mobilises, and further develops, STS material semiotics tools to provide an account of donation enacted as both procurement and healthcare. Ethnographic insights illustrate the shifting processes of mutual inclusion and exclusion that underpin the trajectory of integrating donation as a routinized hospital practice, along the recurring set of enduring tensions. This is achieved by following the work of TCs along the stages of donor detection, evaluation, maintenance, consent request and organ extraction. Crucially, the analytical focus decenters the individual actors’ perspectives, broadening the scope of the inquiry and making visible the complex sociomaterial arrangements that take place, inside and outside the hospital, which are rendered as a gradual process of assembling donations. Families’ consent to donation is essential but it is decentered, it is neither that which starts a donation process nor the only factor that contributes to the assembling of a donation process. Unlike available anthropological and sociological studies of donation this work is not about documenting the reductionist transition from patient to donor, whole to parts, person to thing and denouncing the fall from subject to object reified in donation practices. The emphasis here is on tracing the overlap between donors as patients, thus the analysis shows the shifting enactments of the embedded donor/patient configuration, which includes the donor/body, donor/person and donor/corpse figures simultaneously along the donation process. The intervention of bodies as active entities is examined through a speculative and pragmatic elucidation on the situated and relational enactments of responsive bodies and organs. This thesis contributes to contemporary re/articulations of materiality and agency through the lens of distributed joint action and entangled actors from a nonanthropomorphic stance. The research also contributes to current policy debates in the UK, and in Scotland in particular, that propose to tackle the national problem of low donation rates with a legislative move to an opt-out system for donation. It offers robust empirical evidence to contest the dominant organ shortage problematisation that is reduced to the legal polarity of either opting in or out of donation. I suggest that questions about increasing donation rates cannot be restricted to the domain of individual choice as this excludes the situated medical practices that enable the choice of donation in the first place.

Denmark is a major exporter of both anonymous and identity-release donor sperm worldwide, and is home to one the world's largest sperm bank networks. The country's legal framework allows for sperm donors to make the choice whether to be anonymous or to release their identity to potential offspring, in contrast to the majority of European countries which require either anonymity or identity-release donation. As such, it represents a chance for researchers to draw comparisons between donors who have explicitly made these different choices. This thesis draws on data from thirteen in-depth semi-structured interviews carried out with donors at a major Danish sperm bank. I suggest that neither the traditional ‘beer money for the weekend’ nor the currently-popular ‘wanting to help’ narrative of sperm donation tells the full story; the experiences of these donors cannot be expressed fully using an altruistic gifting model, but neither are they fully captured in terms of the capitalist exchange of labour; as ‘help’ or as ‘work’. Donor virility, and by extension masculinity, is represented through sperm quality and the discourse of “good sperm”, which then explicitly informs donor payment, complicating the relationship between donors’ embodied experience, their pride in their ‘product’ and the various ways in which semen as a substance is understood: “good sperm” could make a donor into a ‘good guy’ who could help with the falling national birth count, whereas sperm that was “bad” could be reframed as the product of donors’ lifestyles or as ‘good soldiers’ fighting against the freezing process. Donor accounts of sperm donation were also informed by the wider web of connections that are formed through the process of sperm donation: real, potential, or imagined connections between donor and offspring, donor and their imagined ‘good’ recipient, offspring and donor families, and donors and the wider Danish nation in terms of the production of so-called ‘Viking sperm’ and the extension of the ‘help’ discourse through the falling Danish sperm count.

Social science research on third sector organisations in the last two decades has emphasised their growing presence and importance in healthcare. This has occurred alongside significant reorganisation of health systems in the UK, including a continued policy emphasis on partnership-working between the public sector and the third sector. However, unanswered questions in the literature remain with regard to the specific roles that these organisations fulfil within partnership arrangements. This thesis examines the role of third sector organisations within Scottish services for the chronic, neurodegenerative condition Huntington’s disease (HD). The closely connected nature of Scottish healthcare and the multitude of professionals involved in HD mean these services are an important, but currently understudied, example of professional interaction around complexity. A multi-methods qualitative research framework was used to gather perspectives of key individuals working in the Scottish HD and wider health scene. Making use of the key concepts of expertise and boundary work, this thesis argues that third sector organisations have an extensive shaping role in 1) the positioning of healthcare organisations, 2) the identities of healthcare professionals, and 3) the meanings around illness and the remit of support. The research findings revealed that organisations and professionals in HD partnership arrangements engaged in processes of boundary work in the negotiation of the roles of themselves and others. Third sector professionals occupied many positions within services, as both experts and supporters of patients. In the process they and other professionals often took on identities as ‘key, committed professionals’. Understanding around HD was also shaped by these professionals as the wider aspects of illness and its support were brought into focus. Building on these findings, it is argued that third sector professionals in coordination roles are well placed to develop a type of expertise that I term ‘aggregate know-how’ (Pols 2014), based around both their professional skills and their extensive contact with patient experiential knowledge. The research builds on and extends influential previous models of third sector ‘partnership’ in healthcare (Rabeharisoa 2003), emphasising the key role of third sector organisations in knowledge production. It also offers insights of both theoretical and practical use with regard to service delivery in healthcare, showing the potential for genuine third sector/public sector partnership around expertise when there is adequate cultural support and resources.

This thesis explores the processual nature of agency and constraints in the experience of medicalized conception in a not yet explored locale: Bogota, Colombia. In ten months of ethnographic research at two fertility centers in Bogota, and interview data from over 100 in-depth interviews with women and men undergoing ARTs and clinic staff, a complex ART industry driven by both doctors (qua entrepreneurs) and the couples seeking medicalized conception was explored. This thesis identifies how relationships in the clinic combined with understandings of “the fragmented body” (as a medicalized object under scrutiny) and “the self” (as a conscious agent), to produce intricate dynamics of agency and constraints that co-evolved in a processual manner. Tracing the experiences of women in infertility treatment chronologically, the thesis explores how knowledge was established and renegotiated through productive power fields that relationally incorporated embodied, personal knowledge and authoritative medical expertise. Women adapted to constraints in both active and passive ways to create and assert their ever-transforming agentive capacities. In these processes, they were constantly reflecting on, and renegotiating their position in the treatment process, as well as in their social lives more broadly. Drawing on, and seeking to contribute to, literature on agency in ARTs from across the world, particularly literature that considers agency as a process co-established by the constraints it confronts, this thesis makes two key arguments: First, that agency in Colombian ART clinics is defined as reflection and renegotiation, rather than as something which occurs at a singular moment of reflection and renegotiation. Second, that this negotiated process is constrained, but not contained. In other words, agency is a process that looks both backwards and forwards. Women and couples incorporated different personal histories and embodied knowledge into negotiating the treatment process and constraints they encountered, and adapted their experiences of ART treatments to other aspects of their lives, negotiating constraints that reach beyond the clinical setting.