Not only is deception commonplace in medical encounters, according to Christopher Meyers (2021), but the clinical ethicist might have moral obligations to support and even enact deception. Descriptively Meyers is right that there are “opportunistic, self-interested and benevolent reasons” for deception through omission and commission in clinical medicine. But it is possible to retain this premise while rejecting the normative conclusion that the clinical ethicist “should sometimes be an active participant in the deception of patients and families.” One reason to (...) reject the normative conclusion is its incompatibility with providing trauma informed ethics consultation (TIEC). In the TIEC framework I developed with Uchenna Anani, we defend the integration of trauma informed care (TIC) into ethics consultation (Lanphier and Anani 2021). While ethicists narrowly attend to the question and scope of the ethics consults made to them, doing so in alignment with trauma informed principles is tantamount to providing good ethics consultation. According to Meyers, the clinical ethicist is an “advocate for the best ethical choices.” The best ethical choices are also trauma informed ones. (shrink)

According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception (...) of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia : ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role. (shrink)

In order to contain public care expenditure, policymakers in the Netherlands have over the last decades formulated in ever more stringent ways what ought to be expected from spouses, partners, and family members with regard to care for dependent relatives. The current Dutch coalition cabinet plans to shift the principal responsibility for nonmedical care, including demanding forms of care such as long-term personal care, to individuals and families. I argue that these policy developments imply cost (...) redistribution rather than cost containment and that this redistribution is disadvantageous for women. (shrink)

Background While it is generally acknowledged that self-prescribing among physicians poses some risk, research finds such behaviour to be common and in certain cases accepted by the medical community. Largely absent from the literature is knowledge about other activities doctors perform for their own medical care or for the informal treatment of family and friends. This study examined the variety, frequency and association of behaviours doctors report providing informally. Informal care included prescriptions, as well as any (...) other type of personal medical treatment (eg, monitoring chronic or serious conditions). Method A survey was sent to 2500 randomly-selected physicians in Colorado, 600 individuals returned questionnaires with usable data. The authors hypothesised: (1) physicians would prescribe the same types of treatment at home as they prescribed professionally; and (2) physicians who informally prescribed addictive medications would be more likely to engage in other types of informal medical care. Results Physicians who wrote prescriptions for antibiotics, psychotropics and opioids at work were more likely to prescribe these medications at home. Those prescribing addictive drugs outside of the office treated more serious illnesses in emergency situations, more chronic conditions and more major medical/surgical conditions informally than did those not routinely prescribing addictive medications. Physicians reported a variety of informal care behaviour and high frequency of informal care to family and friends. Discussion The frequency and variety of informal care reported in this study strongly argues for profession-wide discussion about ethical and guideline considerations for such behaviour. These areas are discussed in the paper. (shrink)

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely to (...) become involved in the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. (shrink)

Aims and objectives. Participant narratives from a feminist and queer phe- nomenological study aim to broaden current understandings of trauma. Examin- ing structural marginalisation within perinatal care relationships provides insights into the impact of dominant models of care on queer birthing women. More specifically, validation of queer experience as a key finding from the study offers trauma-informed strategies that reconstruct formerly disempowering perinatal relationships. Background. Heteronormativity governs birthing spaces and presents considerable challenges for queer birthing women who may (...) also have an increased risk of trauma due to structurally marginalising processes that create and maintain socially constructed differences. Design. Analysis of the qualitative data was guided by feminist and queer phe- nomenology. This was well suited to understanding queer women’s storied narra- tives of trauma, including disempowering processes of structural marginalisation. Methods. Semistructured and conversational interviews were conducted with a purposeful sample of thirteen queer-identified women who had experiences of birthing in rural Nova Scotia, Canada. Results. Validation was identified as meaningful for queer women in the context of perinatal care in rural Nova Scotia. Offering new perspectives on traditional models of assessment provide strategies to create a context of care that recon- structs the birthing space insofar as women at risk do not have to come out as queer in opposition to the expectation of heterosexuality. Conclusions. Normative practices were found to further the effects of structural marginalisation suggesting that perinatal care providers, including nurses, can challenge dominant models of care and reconstruct the relationality between queer women and formerly disempowering expectations of heteronormativity that govern birthing spaces. Relevance to clinical practice. New trauma-informed assessment strategies recon- struct the relationality within historically disempowering perinatal relationships through potentiating difference which avoids retraumatising women with re- experiencing the process of coming out as queer in opposition to the expectation of heterosexuality. (shrink)

The biology of early life adversity explores how social experiences early in life affect physical and psychological health and well-being throughout the life course. In our previous work, we argued that narratives emerging from and about this research field tend to focus on harm and lasting damage with little discussion of reversibility and resilience. However, as the Science and Technology Studies literature has demonstrated, scientific research can be actively taken up and transformed as it moves through social worlds. Drawing on (...) fieldwork with actors in education and juvenile corrections in the US Pacific Northwest, we found that they employed the biology of early life adversity not only to promote prevention but also to argue for changes within their own institutions that would allow them to better serve children and youth who have experienced adversity and trauma. Our study shows that biosocial narratives are neither inherently liberatory nor inherently oppressive but that the situated narrative choreographies in which they are enrolled are essential for their political effects. In our case, we show how these biosocial narratives have been articulated with knowledge and practices from restorative justice and trauma-informed care to reimagine the social meaning of the biology of early life adversity. (shrink)

Berger and Miller argue that cultural competency as an educational tool for physicians-in-training fails to address structural inequality and systemic oppression. Instead, it focuses on “cul...

Owing to its grappling with a motley of intricate socioeconomic, as well as medico-legal, crises, Haiti has found itself bereft of some of its people, many of whom have had to leave the Caribbean country in search of improved lives elsewhere. Receiving some of the Haitian refugees fleeing abject poverty, unemployment, and other harms and barriers has been the United States, one of Haiti's northern neighbors and a country that has played an outcome-determinative, if not outsized, role in steering the (...) country toward its presently hobbled state. Drawing on the U.S.’s recent treatment of Haitian refugees, this paper argues that U.S. reception of Haitian immigrants rubs salt in the wound of a long history of dehumanizing and oppressive abuses endured by Haitians. Furthermore, and more importantly, this paper posits that U.S. failure to wholly embrace its legal obligation to accept Haitian refugees under international law needs to be understood in the light of the specific horrors inflicted by science, in pre-independence Haiti, on non-consenting, Afro-Haitian experimental subjects. And by extension, such a contextually-nuanced understanding is crucial in shaping the delivery of healthcare services to Haitian refugees fortunate enough to remain in the U.S. —as an awareness and appreciation of the socio-historical context of patients' lived experiences, i.e., their complete social history, can furnish important clues vis-à-vis the presence and etiologies of disease, influence the foci of physical exams, and generally pave the way for the provision of cost-efficient and evidence-based care. (shrink)

Complex clinical ethics cases require a blend of compassion, sensitivity, and tenacity in order to navigate the hard work required of stakeholders. Each person comes to the table with rich historie...

The Experiential Therapist steps outside of the medical model to explore alternative ways of thinking about mental health disorders. Peter D. Ladd argues that successful treatment results from an informed understanding of a patient’s experience, not an ability to name and categorize difficult experiences as classical disorders.

It is largely undisputed that nurses should obtain consent prior to nursing care procedures. This article reports on a qualitative study examining the way in which nurses obtain such informed consent. Data were collected through focus group discussion and by using a critical incident technique in order to explore the way in which nurses approach consent prior to nursing care procedures. Qualified nurses in two teaching hospitals in England participated in the study. An analysis of the data provides (...) evidence that consent was often not obtained by those who participated in the study and that refusals of care were often ignored. In addition, participants were often uncertain how to proceed with care when the patient was unable to consent. Consent prior to nursing care procedures is an essential but undeveloped concept, for which a new ethos is required. (shrink)

Background Informed consent prior to nursing care procedures is an established principle which acknowledges the right of the patient to authorise what is done to him or her; consent prior to nursing care should not be assumed. Nursing care procedures have the potential to be unwanted by the patient and hence require an appropriate form of authorisation that takes into consideration the relationship between the nurse and patient and the ongoing nature of care delivery. Research question (...) How do nurses obtain consent from patients prior to nursing care?. Design Critical incident technique and the collection of critical happenings. Participants 17 participants who were all qualified nurses took part in in-depth interviews Ethical considerations Ethical approval was obtained from the university ethics committee. Findings Information giving is a key component prior to nursing care procedures. Nurses provide information to patients as a routine aspect of care delivery, and do so even when the patient is unable to communicate themselves. Whilst some participants described how information giving might be rushed or overlooked at times, it is clearly an established part of nursing care and is provided to ensure the patient knows what to expect when care is delivered. What is less clear is the extent to which information is given in order to seek the consent – rather than merely inform the patient – about nursing care. Conclusion Implied consent is often an appropriate way in which consent is obtained prior to nursing care procedures. It takes into account the ongoing care provision and the relationship that exists between the nurse and patient. However implied consent should not be assumed. Nurses need to ensure that information is given not only to inform the patient about a procedure but to enable the patient to give his or her consent and to find an alternative way forward if the patient withholds their consent. (shrink)

The Office for Human Research Protections was correct in determining that the consent forms for the National Institutes of Health -sponsored SUPPORT study were seriously flawed. Several articles defended the consent forms and criticized the OHRP's actions. Disagreement focuses on three central issues: how risks and benefits should be described in informed consent documents; the meaning and application of the concept of “standard of care” in the context of research; and the proper role of OHRP. Examination of the consent (...) forms reveals that they failed to disclose the reasonably foreseeable risks of the experimental interventions in the study, as well as the potential for differences in the degree of risk between these interventions. Although the concept of “standard of care” may be helpful in determining the ethical acceptability of other aspects of research, such as clinical equipoise, it is not helpful in discussing consent requirements. (shrink)

Cancer care has transitioned from clinical-based to home-based care to support longterm care in a more familiar and comfortable environment. This care transition has put family caregivers (FCGs) in a strategic position as care providers. Cancer care at home involves psychological and emotional treatment at some point, making FCGs deal with the stress of cancer patients frequently. Due to their limited care competencies, they need supportive care from healthcare professionals in cancer stress (...) management. This study aims to examine how types of demanded healthcare information affect the FCG’s role in reducing the stress of female cancer patients. The mindsponge theory was used in conceptual development and interpretation. Bayesian Mindsponge Framework (BMF) analytics were used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of healthcare information, FCGs with higher demand for cancer-specific information were more likely to need support in reducing the stress of female cancer patients. Meanwhile, FCGs with a higher demand for information about support services were less likely to need support to reduce cancer patients’ stress. Other types of healthcare information have ambiguous effects on the need for support in reducing cancer-induced stress. This study reveals that the demanded cancer-specific information, e.g., cancer prognosis or likely outcome, must be prioritized to assist FCG’s role in managing cancer stress. (shrink)

Current legal standards of informed consent send the wrong message to physicians about their moral and legal expectations. A “transparency” model that sees consent as a conversation process can enhance good medical practice and patient autonomy without foreclosing appropriate judicial review.

There has been increased interest in what the philosophical subdiscipline of phenomenology can contribute to medical humanities due to its dual emphases on practicality and its attempt to understand the experience of others, thus positioning it as a potentially helpful conceptual toolkit to guide clinical care. Using various figures from the phenomenological tradition, most prominently Martin Heidegger and Martin Buber, the authors illuminate relevant philosophical concepts, employ them in various examples, and provide three principles revolving around empathy, communication, and (...) listening to patients’ individual values to guide medical professionals who practice the art of medicine in cancer care settings. (shrink)

Informed consent in medical practice is essential and a global standard that should be sought at all the times doctors interact with patients. Its intensity would vary depending on the invasiveness and risks associated with the anticipated treatment. To our knowledge there has not been any systematic review of consent practices to document best practices and identify areas that need improvement in our setting. The objective of the study was to evaluate the informed consent practices of surgeons at University teaching (...) Hospitals in a low resource setting. (shrink)

Typically seniors like others choose to avoid institutional care. However, when age-related infirmity requires it, they not only enter into the care of others, but they also do so as vulnerable members of society. As their frailty increases with age, so does their dependence on the professionals who care for them and on the enforcement of policies concerning their care. A qualitative case study involving seniors and their carers revealed that breaches of confidentiality, unprofessional behaviour and (...) the non-enforcement of policy, continue to hide the physical and emotional abuse perpetrated by nursing and other staff on vulnerable consumers. Professional ethics, including at a corporate level, enforcing policy, protecting whistleblowers and creating reporting mechanisms for aged care researchers, are amongst the recommendations arising from this study. (shrink)

BackgroundEthics consultations are established in contemporary health care. Informal ethics consultations often occur and are possibly beneficial, yet they have not been empirically studied. We sought to describe features of informal ethics consultations and to identify facilitators and disruptors of patient participation in such ethics consultations.MethodsWe used a mixed methods (quantitative and qualitative) evaluation design and conveniently sampled 64 sequential informal ethics consultations over a period of 3 years in two academic health care centers in (...) one city in Canada. Data were collected by the two participating ethicists. We used statistical description for the quantitative data and thematic analysis for the qualitative data.ResultsPatients participated in only two (3%) of the informal ethics consultations. Factors that disrupted patient participation in ethics consultations were related to patients’ issues (mental impairments), family issues (family withholding information from the patient), and team members’ issues (efficiency considerations).ConclusionInformal ethics consultations may be used for ethics capacity building of health care providers rather than for engagement with addressed patients. Further research on informal ethics consultations is required, including in different sites. (shrink)

Adaptation and stress are two main concepts useful for better understanding the phases of illness and health-related human behavior. The two faces of adaptation, adaptation as a process and adaptation as a product, have raised the question of how long the adaptation process will take in cancer trajectories. The care setting transition from clinical-based into home-based cancer care has stressed the role of family caregivers (FCG) in cancer management. This study examines how types of demanded healthcare information affect (...) the FCG’s role in catalyzing the adaptation of female cancer patients. The mindsponge theory was used in conceptual development and results interpretation. Bayesian Mindsponge Framework (BMF) analytics was used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of demanded healthcare information, FCGs with a higher tendency to demand cancer-specific information are more likely to need support in catalyzing the adaptation of female cancer patients. Meanwhile, FCGs with a higher demand for information on alternative therapies are less likely to need support in catalyzing cancer adaptation. Other types of healthcare information have ambiguous effects on the need for support in cancer adaptation assistance. This study reveals that the demanded cancer-specific information, e.g., cancer’s prognosis or likely outcome, must be prioritized to assist FCG’s role in catalyzing adaptation among female cancer patients. Cancer prognosis and outcomes reflect the future of cancer care results. (shrink)

This essay argues that our national efforts at health reform ought to be informed by eleven key lessons from Oregon. Specifically, we must learn that the need for health care rationing is inescapable, that any rationing process must be public and visible, and that fair rationing protocols must be self-imposed through a process of rational democratic deliberation. Part I of this essay notes that rationing is a ubiquitous feature of our health care system at present, but it is (...) mostly hidden rationing, which is presumptively unjust. Part II argues that the need for health care rationing is inescapable. Although Oregon is flawed as a model of health rationing, it gives us worthy moral lessons for health reform at the national level, which I analyze and defend in Part III. The most significant of these lessons is the importance of rational democratic deliberation in articulating fair rationing protocols for a community. In Part IV I sketch the philosophic justification for this approach and respond to some important criticisms from Daniels. Keywords: cost containment, democratic deliberation, fairness, justice, rationing CiteULike Connotea Del.icio.us What's this? (shrink)

This essay takes a Traditional Christian, that is, Orthodox look at the integration of psychotherapy into pastoral counseling, as endorsed by many Western mainline Christianities. It examines how the Christian pastor can guide his sheep through the bioethical problems they encounter in their pursuit of salvation. The first part explores whether the turn to psychology and psychotherapy can be welcomed as a return to the Traditional therapeutic understanding of theology and of the Church as a spiritual hospital for fallen souls. (...) The second part examines two typical ways in which non-Orthodox Christianities embrace psychotherapy in pastoral counseling, as directed to unburdening parishioners from their doubts about bioethical decision making in the context of a Christian life. This part highlights the theological assumptions (about the pastor, his care, and the notion of God informing both) framing that embrace and shows them to be incompatible with the Traditional commitment to man's Divine vocation. The turn to psychotherapy here, rather than inaugurating a return to the therapeutic spirit of Traditional theology, offers a secularized substitute. The third part investigates the possibility of a Traditional Christian way of practicing psychotherapy along with its significance for Orthodox pastoral care in bioethical counseling. Here it becomes clear that, even beyond incompatible theological assumptions, already psychotherapy's endorsement of a predominantly discursive approach to healing is alien to Traditional pastoral care. (shrink)

Medical care of critically ill and injured infants and children globally should be based on best research evidence to ensure safe, efficacious treatment. In South Africa and other low and middle-income countries, research is needed to optimise care and ensure rational, equitable allocation of scare paediatric critical care resources.

In December of 1899, Sir John Scott Burdon-Sanderson delivered an address to the Middlesex Hospital Medical Society in London on the relation between science and medicine. Commenting specifically on the future of medicine in the upcoming century, he criticized the gap between scientific research in academic settings and the practice of medicine in the clinical setting. He ends by stating that “all depends on whether you accept the proposition I have submitted to you—namely, that the science of medicine, even more (...) than the art, holds the promise of the future” (Burdon-Sanderson 1900, 255). Burdon-Sanderson’s proposition was actualized in the United States through the Flexner Report of 1910, which helped to universalize what medical education would come to look like in the country: the emphasis was placed squarely on science, rather than art (Flexner 1910). While there are still gaps between clinical practice and scientific research, there is no doubt that modern medicine is scientific medicine. There is also no doubt that scientific medicine leads to better health outcomes (Duffin 2010).However, some have argued that the emphasis of medicine as a science has left the art of medicine behind, to the detriment of modern medicine. Thomas Duffy, for instance, an internist at the Yale School of Medicine, states that the aftermath of the Flexner Report “created an excellence in science that was not balanced by a comparable excellence in clinical caring” (2011,276). Indeed, at the onset of our current century, many called for a reinvestment in the art of medicine so as to balance the emphasis on science (The Commonwealth Fund 2002; Committee on the Roles of Academic Health Centers in the 21 st Century 2003; Association of American Medical Colleges 2004). The burgeoning field of medical humanities—that is, the interdisciplinary field dedicated to demonstrating “how the arts and humanities inform and 2elevate the work of healing” (Campo 2005)—is evidence that such calls have been heard. While we surely want to celebrate scientific medicine, there are certain areas of medical practice where the art of medicine is as important, if not more important , as the science of medicine. We argue that one of those areas is the sphere of cancer care in which health professionals are asked not only to treat patients with cancer, but also to help them navigate through what is oftentimes one of the scariest, most vulnerable, and suffering-ridden times of their lives. Using concepts from the phenomenological tradition, we aim to provide philosophical clarity to situations in the medical setting in which health professionals must treat the whole person, rather than simply the person’s body, in order to provide proper patient care, thus highlighting an element of the art of medicine. We end by providing three principles that we think can help guide phenomenologically-informed cancer care. (shrink)

This paper explains why informed consent for randomized comparative effectiveness research must include risks of standard care. Disclosures of such risks are both legally and ethically required and, for reasons discussed in the paper, should remain so.

Notions of care for humans and more-than-humans appear at the margins of the sustainability transformations debate. This paper explores the merits of an ethics of care approach to sustainability tr...

Volume 20, Issue 6, June 2020, Page 49-51.

: Arguments for efficiency in health care delivery have been used to support some level of withholding of information about available treatment options from patients in managed care systems. To the extent that such arguments prevail, they may necessitate changes in the established understanding of and commitment to informed consent and the disclosure of information to patients.

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 19 Heft: 1 Seiten: 107-114.

Many authors have described the ethical issues associated with international adoption for all members of the adoption triad, including adoptive parents, birth parents and the adopted child, and for both sending and receiving countries. This paper explores how political variants of care ethics, combined with a narrative approach to practice, can be used as a conceptual framework for ethically informed practice with families formed via international adoption. Political variants of care ethics foreground the particularized needs of the individual, (...) but also take into account the broader social, political, economic and cultural dynamics in which the experience of individuals occurs. This framework is particularly applicable to collaborative work with individuals or groups, such as families formed via international adoption, whose experience is both highly individualized and shaped by broader contexts and issues of social justice. This paper describes how changes in the social construction of international adoption have meaning for applied ethics and practice. Political variants of care ethics are then explored as a framework for ethical decision making. Finally, the relevance of a narrative, approach to practice is considered. This approach focuses on understanding the needs and experiences of families from their own points of view and within the social, economic, cultural and political contexts in which they have lived; linking a relationship-based, narrative approach to practice to important assumptions in many models of care ethics. (shrink)

A critique and provincialization of Western social science and Global Northern academia by the author of The Digital Coloniality of Power, exposing shared colonial and extractive rationalities and histories of research, higher education, digitalization and bioeconomy while proposing in the idea of BluesCollarship a sketch for an alternative culture of worlding and commoning knowledge work and for making care matter in research and higher education. In a discourse analysis and provincialization of research and higher education, a tradition of elitarian (...) White Collaredness in academia and in the social sciences in general is criticized and an alternative attitude towards the production, transfer and use of knowledge - BluesCollarship - is proposed. The latter is rooted in a different idea of what 'infrastructure' is and in practices of decoloniality. Noting the current political climate of propaganda and populism, the persistence of social inequalities as well as of racism and misogynism, it is proposed that how people give warrant for knowledge claims should be reviewed under different terms. A coherent theme is that there is a genealogical root for current neo-extractive and neo-colonial rationalities in the Athenian idea of oikos conflating family, household, and property. In taking a distinctly writerly approach - rather than giving ready-made answers - the book aims at permanently provoking readers at every turn to think further, as well as before-and-beyond what is written, but to do so in thinking together with Others. Thereby the book addresses scholars and students from across the social sciences who seek challenges to established ways of thinking in academia without simply replacing one canon for merely another. This book is for those who think of themselves as knowledge and cultural laborers in this age of precarization who seek to replace the university and cognitive capitalism with a pluriversity and an infrastructure build on knowledge and culture as fundamental value. (shrink)

This article discusses under what circumstances patients who are suffering from senile dementia or mental retardation should be submitted to coercive care, who should decide about this kind of coercion, and in what legal framework it should take place. A distinction is drawn between modest (i.e. of moderate degree) and meddlesome coercion. The use of modest coercion is defended. It is argued that medical personnel ought to decide exclusively about the use of modest coercion. However, no law should render (...) legitimate the use of even modest coercion. It is conceded that to prohibit the use of a kind of coercion that is expected to take place is hypocrisy. It is argued that this is, however, an acceptable form of hypocrisy. (shrink)

The analysis of data from electronic health records aspires to facilitate healthcare efficiencies and biomedical innovation. There are also ethical, legal and social implications from the handling of sensitive patient information. The paper explores the concerns, expectations and implications of the National Health Service England care.data programme: a national data sharing initiative of linked electronic health records for healthcare and other research purposes. Using Nissenbaum’s contextual integrity of privacy framework through a critical Science and Technology Studies lens, it examines (...) the way technologies and policies are developed to promote sustainability, governance and economic growth as the de facto social values, while reducing privacy to an individualistic preference. The state, acting as a new, central data broker reappropriates public ownership rights and establishes those information flows and transmission principles that facilitate the assetisation of NHS datasets for the knowledge economy. Various actors and processes from other contexts attempt to erode the public healthcare sector and privilege new information recipients. However, such data sharing initiatives in healthcare will be resisted if we continue to focus only on the monetary and scientific values of these datasets and keep ignoring their equally important social and ethical values. (shrink)

The focus of this article is on elderly patients’ and nursing staff perceptions of informed consent in the care of elderly patients/residents in five European countries. The results suggest that patients and nurses differ in their views on how informed consent is implemented. Among elderly patients the highest frequency for securing informed consent was reported in Finland; the lowest was in Germany. In contrast, among nurses, the highest frequency was reported in the UK (Scotland) and the lowest in Finland. (...) In a comparison of patients’ and nurses’ perceptions, nurses had more positive views than patients in all countries except Finland. Patients with less need for nursing interventions in Greece and Spain gave their consent less often. The German and Greek patients were older, and the results also point to an association between this and their lower frequency of giving consent. In Spain, patients who were married or who had a family member or friend to look after their personal affairs were more likely to be included in the group whose consent was sought less often. This is the fourth of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented. (shrink)