BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and (...) health-related data for observational research.MethodsWe conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues.ResultsSudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives.ConclusionsSudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well. (shrink)

Dependency is fundamental to caring relationships. However, given that dependency implies asymmetry, it also brings moral problems for nursing. In nursing theory and theories of care, dependency tends to be framed as a problem of self‐determination—a tendency that is mirrored in contemporary policy and practice. This paper argues that this problem frame is too narrow. The aim of the paper is to articulate additional theoretical ‘problem frames’ for dependency and to increase our understanding of how dependency can be navigated in (...) practices of long‐term care. It does so by way of an empirical ethical analysis of how care professionals tackle the problem of dependency in group homes for people with intellectual disabilities. The paper refers to these practices of mitigating the problem of dependency as ‘dependency work’, a phrase borrowed from Eva Kittay. The analysis of dependency work suggests that for care professionals, dependency is a threefold problem: one of self‐determination, one of parity and one of self‐worth. These findings suggest that patient autonomy cannot be a full solution to the problem of dependency in long‐term care relations. But they also show that dependency as such is not a problem that can be solved, as attempts to mitigate it only serve to tighten the dependency relationship further. This is the paradox of dependency work. (shrink)

BackgroundThis is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable.MethodsUsing qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis. ResultsFrom the eight objectives presented to (...) the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results.ConclusionsOur results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry. (shrink)

Care ethics as initiated by Gilligan, Held, Tronto and others has from its onset been critical towards ethical concepts established in modernity, like ‘autonomy’, alternatively proposing to think from within relationships and to pay attention to power. In this article the question is raised whether renewal in this same critical vein is necessary and possible as late modern circumstances require rethinking the care ethical inquiry. Two late modern realities that invite to rethink care ethics are complexity and precariousness. Late modern (...) organizations, like the general hospital, codetermined by various systems are characterized by complexity and the need for complexity reduction, both permeating care practices. By means of a heuristic use of the concept of precariousness, taken as the installment of uncertainty, it is shown that relations and power in late modern care organizations have changed, precluding the use of a straightforward domination idea of power. In the final section a proposition is made how to rethink the care ethical inquiry in order to take late modern circumstances into account: inquiry should always be related to the concerns of people and practitioners from within care practices. (shrink)

Dependency functions as a keyword in care theory. However, care theorists have spelled out the ontological and moral ramifications of dependency in different and often conflicting ways. In this article, I argue that conceptual disputes about dependency betray a fundamental discordance among authors, rooted in the empirical premises of their arguments. Hence, although authors appear to share a vocabulary of dependency, they are not writing about quite the same phenomenon. I seek to elucidate these differences by teasing out and comparing (...) different conceptions of dependency found in the literature. Borrowing a phrase from Eva Kittay, I trace four “paradigm cases” of dependency: the infant, the physically disabled person, the profoundly intellectually disabled person, and the refugee. These paradigm cases serve as the empirical touchstone from which theorists extract their conceptions of dependency. Each paradigm case, moreover, permits a particular ethical sensibility toward care. How we understand and value dependency thus seems to determine how we understand and value care, and vice versa. In this way, I contend, our normative orientation toward care might influence what sorts of dependency we see—and, by extension, which forms of dependency we fail to notice. (shrink)

To put frameworks of Responsible Innovation and Responsible Research and Innovation (R(R)I) into practice, engagement methods have been developed to study and enhance technoscientific experts’ capacities to reflexively address value considerations in their work. These methods commonly rely on engagement between technoscientific experts and social scholars, which makes them vulnerable to structural barriers to interdisciplinary collaboration. To circumvent these barriers, we adapt Socio-Technical Integration Research (STIR) for broader use within technoscientific communities. We call this adaptation: reflexive practitioner dialogues. While the (...) primary aim of this article is to introduce and explain the methodological adaptation, we also analyze results from a pilot study with participants who are involved in research on contemplative practices such as mindfulness meditation. The analysis is guided by research questions that sought to assess whether and under what conditions the practitioner dialogues support reflexive and practical engagement with value considerations in participants’ work. The results indicate that reflexive practitioner dialogues can stimulate reflexive awareness of value conflicts and help re-direct decision-making responsively. We characterize the conditions facilitating such responsiveness as “value exnovators,” highlighting the oft-unacknowledged interpersonal relational practices that support collaborative engagement with value considerations. We suggest that “exnovation”—exposing the strengths of given practices for their improvement—can support R(R)I practices by directing analytical attention to their micro-level carriers. (shrink)

Unlike sonographic examinations, sonic fetal heartbeat monitoring has received relatively little attention from scholars in the social sciences. Using the case of fetal heartbeat monitoring as part of midwifery prenatal care in Germany, this contribution introduces music as an analytical tool for exploring the aesthetic dimensions of obstetrical surveillance practices. Based on ethnographic stories, three orchestrations are compared in which three different instruments help audiences to listen to what becomes fetal heartbeat music and to qualify fetal and pregnant lives in (...) relation to each other. In the Doppler-based orchestration, audible heartbeat music is taken as a sign of a child in need of parental love and care cultivated to listen. The Pinard horn makes esoteric fetal music that can be appreciated by the midwife as a skilled instrumentalist alone and helps to enact a child hidden in the belly. The cardiotocograph brings about soothing music and a reassuring relationship with a child but also durable scripts of juridical beauty. This material-semiotic analysis amplifies how well-being is shaped in midwifery prenatal care practices. (shrink)

Since the outbreak of COVID-19, governments have turned their attention to digital contact tracing. In many countries, public debate has focused on the risks this technology poses to privacy, with advocates and experts sounding alarm bells about surveillance and mission creep reminiscent of the post 9/11 era. Yet, when Apple and Google launched their contact tracing API in April 2020, some of the world’s leading privacy experts applauded this initiative for its privacy-preserving technical specifications. In an interesting twist, the tech (...) giants came to be portrayed as greater champions of privacy than some democratic governments. This article proposes to view the Apple/Google API in terms of a broader phenomenon whereby tech corporations are encroaching into ever new spheres of social life. From this perspective, the advantage these actors have accrued in the sphere of the production of digital goods provides them with access to the spheres of health and medicine, and more worrisome, to the sphere of politics. These sphere transgressions raise numerous risks that are not captured by the focus on privacy harms. Namely, a crowding out of essential spherical expertise, new dependencies on corporate actors for the delivery of essential, public goods, the shaping of public policy by non-representative, private actors and ultimately, the accumulation of decision-making power across multiple spheres. While privacy is certainly an important value, its centrality in the debate on digital contact tracing may blind us to these broader societal harms and unwittingly pave the way for ever more sphere transgressions. (shrink)

This paper articulates dignity as relational engagement in concrete care situations. Dignity is often understood as an abstract principle that represents inherent worth of all human beings. In actual care practices, this principle has to be substantiated in order to gain meaning and inform care activities. We describe three exemplary substantiations of the principle of dignity in care: as a state or characteristic of a situation; as a way to differentiate between socio-cultural positions; or as personal meaning. We continue our (...) analysis by presenting cases on dignity in care related to us in focus groups with medical professionals. Our empirical ethical lens is in this paper is to analyse, not the meaning of dignity, but the way in which it emerges in practices where it is pursued, within relationships between people, technologies, places, regulations, and the values cherished by or embedded in them. We show that professional caregivers recognize in the dignity of the person they care for their own dignity; giving up on the one implies no less than giving up on the other. This ‘mirrored experience’ of dignity expresses itself in professional’s engagement with the situation. The value of this engagement, we argue, lies not primarily in realizing the particular content of the values at stake. We point to the importance of engagement itself, even if the values engaged with cannot be realized to the full, and even if competing versions of dignity are at stake simultaneously. In this way the caregivers provide us with interesting examples of moral actorship in situations of conflicting values. (shrink)

Discussing the workings of technology in care as aesthetic rather than as ethical or epistemological interventions focusses on how technologies engage in and change relations between those involved. Such an aesthetic study opens up a repertoire to address values that are abundant in care, but are as yet hardly theorized. Kamphof studies the problem that sensor technology reveals things about the elderly patients without the patients being aware of this. I suggest improvement of these relations may be considered in aesthetic (...) terms, for instance by developing the affective quality of people’s technological relationships. (shrink)

This article is a written version of the lecture for the IPONS conference in Stockholm. The article starts from the claim that there is no such thing as technology, only different variations of technologies. These technologies, plural, all have their specific workings that we can only learn about by studying these empirically, by analysing the relations between people and their technologies. These relations are always unpredictable, as it is not given beforehand what values the participants pursue. Studying and understanding the (...) workings of healthcare technology is a crucial task for nursing studies, as nurses are often key actors in making these devices work. The article hands the reader some tools to engage in the study of technologies in practice, using an empirical ethics approach. (shrink)

In this paper, we argue that ‘good care’ in residential nursing homes is enacted through different care practices that are either inspired by a ‘professional logic of care’ that aims for justice and non-maleficence in the professional treatment of residents, or by a ‘relational logic of care’, which attends to the relational quality and the meaning of interpersonal connectedness in people’s lives. Rather than favoring one care logic over the other, this paper indicates how important aspects of care are constantly (...) negotiated between different care practices. Based on the intricate everyday negotiations observed during an ethnographic field study at an elderly nursing home in Germany, the paper puts forth the argument that care is always a matter of tinkering with different, sometimes competing ‘goods’. This tinkering process, which unfolds through ‘intuitive deliberation’, ‘situated assessment’ and ‘affective juggling’ is then theorized along the conceptualization of a ‘practical ethics of care’: an ethics which makes no a priori judgments of what may be considered as good or bad care, but instead calls for momentary judgments that are pliable across changing situations. (shrink)

Background: Enhancing client autonomy requires close coordination of interactional practices between nurse and client, which can cause challenges when interaction takes place in video-mediated settings. While video-mediated services have become more common, it remains unclear how they shape client autonomy in telehomecare. Research aim: To analyse how video mediation shapes client autonomy when nurses guide medicine taking remotely through video-mediated home care. Research design: This is a conversation analytic case study using video recordings of telehomecare encounters. The theoretical approach draws (...) on ethnomethodology and empirical ethics. Participants and research context: Four home-dwelling older adults and three nurses participated in the data collection; data extracts include one client and two nurses. The study was conducted in Finland. Ethical considerations: Special attention was given to protect the rights of home care clients. An ethical statement for the study was given by the Ethics Committee of the Tampere Region Findings: Video mediation complicates interacting remotely with care-relevant artefacts because of nurses’ limited visual access to the medicine and client’s need to simultaneously engage in vocal interaction and medicine taking. This can be overcome by dividing the guidance into manageable steps which invite the client to explicate their readiness to take the medicine and situating the video-mediation equipment and medicine close together. Different interactional practices and ways of situating video-mediation equipment and medicine have consequences for client autonomy. Discussion: Understanding client autonomy in digitalised settings demands empirical examination that recognises the importance of different human and non-human aspects of care that shape client autonomy. Conclusions: To harness the benefits of video-mediated home care, communication technologies’ reliance on home space and interactional practices should be recognised. Empirical ethics research is needed in order to make normative suggestions that fit a wide variety of care situation. (shrink)

In the early months of 2020, the deadly Covid-19 disease spread rapidly around the world. In response, national and regional governments implemented a range of emergency lockdown measures, curtailing citizens’ movements and greatly limiting economic activity. More recently, as restrictions begin to be loosened or lifted entirely, the use of so-called contact tracing apps has figured prominently in many jurisdictions’ plans to reopen society. Critics have questioned the utility of such technologies on a number of fronts, both practical and ethical. (...) However, little has been said about the ways in which the normative design choices of app developers, and the products that result therefrom, might contribute to ethical reflection and wider political debate. Drawing from scholarship in critical design and human–computer interaction, this paper examines the development of a QR code-based tracking app called Zwaai (‘Wave’ in Dutch), where its designers explicitly positioned the app as an alternative to the predominant Bluetooth and GPS-based approaches. Through analyzing these designers’ choices, this paper argues that QR code infrastructures can work to surface a set ofethical–political seams, two of which are discussed here—responsibilizationandnetworked (im)permanence—that more ‘seamless’ protocols like Bluetooth actively aim to bypass, and which may go otherwise unnoticed by existing ethical frameworks. (shrink)

It has now become a realistic prospect for smart care to be provided at home for those living with long-term conditions such as dementia. In the contemporary smart care scenario, homes are fitted with an array of sensors for remote monitoring providing data that feed into intelligent systems developed to highlight concerning patterns of behaviour or physiological measurements and to alert healthcare professionals to the need for action. This paper explores some ethical issues that may arise within such smart care (...) systems, focusing on the extent to which ethical issues can be addressed at the system design stage. Artificial intelligence has been widely portrayed as an ethically risky technology, posing challenges for privacy and human autonomy and with the potential to introduce and exacerbate bias and inequality. While broad principles for ethical artificial intelligence have become established, the mechanisms for governing ethical artificial intelligence are still evolving. In healthcare settings the implementation of smart technologies falls within the existing frameworks for ethical review and governance. Feeding into this ethical review there are many practical steps that designers can take to build ethical considerations into the technology. After exploring the pre-emptive steps that can be taken in design and governance to provide for an ethical smart care system, the paper reviews the potential for further ethical challenges to arise within the everyday implementation of smart care systems in the context of dementia, despite the best efforts of all concerned to pre-empt them. The paper concludes with an exploration of the dilemmas that may thus face healthcare professionals involved in implementing this kind of smart care and with a call for further research to explore ethical dimensions of smart care both in terms of general principles and lived experience. (shrink)

Throughout the Global North, policymakers invest in large-scale integration of health-data infrastructures to facilitate the reuse of clinical data for administration, research, and innovation. Debates about the ethical implications of data repurposing have focused extensively on issues of patient autonomy and privacy. We suggest that it is time to scrutinize also how the everyday work of healthcare staff is affected by political ambitions of data reuse for an increasing number of purposes, and how different purposes are prioritized. Our analysis builds (...) on ethnographic studies within the Danish healthcare system, which is internationally known for its high degree of digitalization and well-connected data infrastructures. Although data repurposing ought to be relatively seamless in this context, we demonstrate how it involves costs and trade-offs for those who produce and use health data. Even when IT systems and automation strategies are introduced to enhance efficiency and reduce data work, they can end up generating new forms of data work and fragmentation of clinically relevant information. We identify five types of data work related to the production, completion, validation, sorting, and recontextualization of health data. Each of these requires medical expertise and clinical resources. We propose that the implications for these forms of data work should be considered early in the planning stages of initiatives for large-scale data sharing and reuse, such as the European Health Data Space. We believe that political awareness of clinical costs and trade-offs related to such data work can provide better and more informed decisions about data repurposing. (shrink)

Business Ethics: A European Review, EarlyView.

Intense interspecies engagements are central to the work of ecologists, as they seek to understand our rapidly changing world. To explore researcher-bird engagements in ecological fieldwork, we use a lens of care. Taking as a starting point the widely shared photos of bird-in-the-hand that portray situations where individual birds become sources of data about populations, we show the significance of complex care work in ethically and epistemically loaded moments. Crucial knowledge about survival, biodiversity loss and animal welfare emerges at the (...) intersection of multispecies care for individuals, for populations and for knowledge infrastructures. We put forth the concept of intermittent care to explain the changing concerns for individual birds here-and-now or for populations of the future. Attention to care therefore helps unravel how ecological knowing depends on entanglements between humans, nature, and technologies that take shape through a constant negotiation of different strands and matters of multispecies care. (shrink)

The dominant idea in debates on social inclusion of people with intellectual disabilities is that social inclusion requires recognition of their ‘sameness’. As a result, most care providers try to enable people with intellectual disabilities to live and participate in ‘normal’ society, ‘in the community’. In this paper, we draw on (Pols, Medicine Health Care and Philosophy 18:81–90, 2015) empirical ethics of care approach to give an in-depth picture of places that have a radically different take on what social inclusion (...) for people with intellectual disabilities looks like: places known as ‘sheltered living institutions’. We argue these places can be seen as ‘communities of difference’ catered to the specific needs and capacities of the residents. We then contend that these communities raise questions about what a good life for people with intellectual disabilities looks like and where and how it ought to be realised; questions not posed very often, as they get muzzled by the dominant rhetoric of normalisation and the emphasis on sameness. (shrink)

Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...) a European research consortium demonstrate a gap between the aims of the regulation and its effects in practice. Namely, strictly formalised data protection requirements may cause routinisation among researchers instead of substantive ethical reflection, and may crowd out trust between actors in the health data research ecosystem; while harmonisation across Europe and data sharing between countries is hampered by different interpretations of the law, which partly stem from different views about ethical values. Then, building on these observations, we use theory to argue that the concept of trust provides an escape from the privacy-solidarity debate. Lastly, the paper details three aspects of trust that can help to create a responsible research environment and to mitigate the encountered challenges: trust as multi-agent concept; trust as a rational and democratic value; and trust as method for priority setting. Mutual cooperation in research—among researchers and with data subjects—is grounded in trust, which should be more explicitly recognised in the governance of health data research. (shrink)