Ethical boundary-work in the embryonic stem cell laboratory

Most accounts of the ethics of stem cell research are de- contextualised reviews of the ethical and legal literature. In this chapter we present a socially embedded account of some of the ethical implications of stem cell research, from the perspectives of scientists directly involved in this area. Based on an ethnography of two leading embryonic stem cell laboratories in the UK, our data form part of the findings from a larger project mapping the scientific, medical, social and ethical dimensions of innovative stem cell treatment, focusing on the areas of liver cell and pancreatic islet cell transplantation. We explore three key issues: what individual scientists themselves view as ethical sources of human embryos and stem cells; their perceptions of human embryos and stem cells; and how scientists perceive regulatory frameworks in stem cell research. We argue that these dimensions of laboratory practice are all examples of 'ethical boundary-work', which is becoming an integral part of the routine practice and performance of biomedical science. Our work adds to the relatively few sociological studies that explore ethics in clinical settings and to an even smaller body of work that explores scientists' views on the ethical issues relating to their research.     

Ethical boundary-work in the infertility clinic

Infertility practice and reproductive technologies are generally seen as 'controversial' areas of scientific inquiry that raise many complex ethical issues. This paper presents a qualitative study that considered how clinicians constructed the role of the 'ethical' in their everyday practice. We use the concept of ethical boundary-work to develop a theory of 'settled' and 'controversial' morality to illuminate how infertility clinicians drew boundaries between different conceptions of the role ethics played in their practice. An attention to areas of settled morality, usually rendered invisible by their very nature, enables us to see how clinicians manage the 'ethical' in their practice. We argue that by creating a space of 'no-ethics' in their practice--part of a settled morality that does not require articulation--the informants re-appropriate an area of their practice from 'outside' influences and control. Bringing these elements to light can help 'outsiders' to challenge and question these distinctions and therefore bring additional perspectives to debates over morality in the infertility clinic. Illuminating the everyday ethical concerns of infertility clinicians can help direct ethical thinking towards these practical concerns, as well as to more abstract debates.     

Ethics as ritual: smoothing over moments of dislocation in biomedicine

Applications of biomedical R&D currently imply substantial societal concerns. This paper explores, based on semi‐structured interviews with scientists in Norway, how biomedical researchers experience and tackle such concerns in their daily work. It shows how ritualised routine responses to dislocatory moments help maintain order in the daily work of the interviewed scientists; they do not address directly but instead smooth over concerns by a ritualised way of using ethics. This may foreclose substantive reflection and function as a stabiliser for ‘business as usual’. Overall, the current way of responding to concerns as described by the interviewees may contribute to a depoliticisation of important issues. The paper contributes to sociological work on ethics by linking it to recent discussions on Responsible Research and Innovation (RRI) and by the empirical research presented. The insights can also help improve science policies such as RRI.     

The Scope of pharmacy ethics-an evaluation of the international research literature, 1990-2002

This paper attempts to provide a critical overview of international published discourse relating to ethical issues in pharmacy practice from 1990 to 2002. We found that there is little research literature specifically addressing ethics in pharmacy practice and almost none addressing fundamental philosophical issues or values for pharmacy ethics. There is no dedicated journal for pharmacy ethics. Most material relating to pharmacy ethics is articulated as codes or pronouncements from professional bodies, as opinion or reflection in textbooks and in debate such as letters and articles. However, this should not be taken to mean that pharmacy and ethics are strangers; simply that such matters are not frequently analysed in published pharmacy literature. The presumption is usually that most matters of pharmacy ethics are very familiar and require no exploration or explanation. Where the research literature does target ethical issues, the most common method is to employ "the scenario approach". This term describes the technique of using a vignette or scenario from actual pharmacy practice and then exploring a variety of possible options to identify one or more defensible solutions. The vast majority of scenarios related to the delivery of healthcare per se; rather fewer derived from delivery of healthcare in a commercial environment. One notable exception to this approach is the body of work by Latif and colleagues on moral reasoning and community pharmacy practice. Our review suggests there is a need for the knowledge base in pharmacy ethics to be systematised and integrated into the wider scheme of general healthcare ethics. The principal areas in which research is needed include, how best to teach and assess "ethical competence" before practice; how to develop and update this competence in practising pharmacists; and how the business environment, particularly where there are corporate values and reward systems in operation, affects ethical competence. In addition, general research in pharmacy practice may benefit from a greater awareness and enquiry as to the ethical issues raised by the projects being undertaken.     

Navigating ‘ethics in practice’: An ethnographic case study with young women living with HIV in Zambia

ABSTRACT

While ‘procedural ethics’ provides essential frameworks for governing global health research, reflecting on ‘ethics in practice’ offers important insights into addressing ethically important moments that arise in everyday research. Particularly for ethnographic research, renowned for it’s fluid and spontaneous nature, engaging with ‘ethics in practice’ has the potential to enhance research practice within global health. We provide a case study for such reflexivity, exploring ‘ethics in practice’ of ethnographic research with middle-income young women living with HIV in Lusaka, Zambia. We explore the ethical issues arising from the layered interaction of the population (young women), the disease under investigation (HIV), the method of study (ethnographic), and the setting (Zambia, a lower middle income country). We describe how we navigated five key practical ethical tensions that arose, namely the psycho-emotional benefits of the research, the negotiated researcher-participant relationship, protecting participants’ HIV status, confidentiality and data ownership, and researcher obligations after the end of the research. We exemplify reflexive engagement with ‘ethics in practice’ and suggest that engaging with ethics in this way can make important contributions towards developing more adequate ethical guidelines and research practice in global public health.     

Teaching ethics to paediatrics residents: the centrality of the therapeutic alliance

Context Previous research on ethical issues encountered by medical professionals in training and practice have presented the thematic content of the cases they encounter rather than the activities in which clinicians engage and in which they most often encounter ethical issues. We conducted a direct observation study of paediatrics residents and their preceptors seeing patients in an out‐patient general paediatrics clinic. Our objectives were to describe the everyday ethics‐related issues paediatrics residents encounter as they interact with patients. Our ultimate goal is to use this knowledge to enhance current efforts to teach ethics to paediatrics residents. Methods The study team directly observed paediatrics residents discussing patients with their faculty preceptors (19 half‐day sessions, 76 hours) in an out‐patient general paediatrics clinic located in an urban academic medical centre. Each interaction between resident and preceptor about a single patient was considered a case for further analysis. Results A total of 247 cases were recorded. Forty‐one of the cases were coded as having ethics‐related content. A constant comparative method of qualitative data analysis revealed that residents were most likely to encounter ethical issues when engaged in the following activities: (i) maintaining a therapeutic alliance with the caregiver (e.g. the parent); (ii) prioritising patient or family needs; (iii) adjusting to the power embodied by the role of doctors, and (iv) distinguishing suboptimal care from abuse or neglect. In addition, our findings indicate that it is through their efforts to maintain the therapeutic alliance with the caregivers of their patients that residents engage in and integrate three processes: developing their medical knowledge; adhering to professional norms, and balancing the power inherent in the doctor’s role with their responsibility to serve the patient’s interests. Conclusions Medical faculty tasked with teaching ethics to paediatrics residents can utilise the results of this project to better target and enhance their ethics education efforts directed at residents in the out‐patient setting. Future research could further examine and test these findings in other clinical settings (e.g. adult general medicine).     

Ethical issues and the importance of consensus for the intensive care team

This paper draws upon an empirical study and combines moral philosophical insights and sociological analysis to shed light on the ethical issues in intensive care. It is argued that moral philosophical debate often leaves aside the social context in which ethical decisions are taken and carried through. In order to gain an understanding of how intensive care is accomplished and specifically how ethical issues are handled, the study focused primarily on nurses' accounts of and views on the practices which form the everyday work of intensive care. A qualitative approach was adopted involving theoretical sampling and the constant comparative method of analysis. The paper argues that the most difficult ethical issue in intensive care, namely the withholding or withdrawal of treatment, is an area in which nursing and medical perspectives are often at odds. However, when the social context of clinical practice is taken into account, this paper argues. there is common ground between the two professions. It was found that the period during which the decision to withdraw treatment is being made, the members of the intensive care team closest to the bedside, nursing and medical staff. become impatient for some resolution of the situation. The differences of opinion which arise over the decision to withdraw are not simply to do with the way in which the situation is experienced by each professional group, proximity to the patient had a part to play in shaping their views rather than, as it is sometimes presumed. a simple rift between medicine and nursing. The data suggest that intensive care has to be a team effort. Even though there is no legal requirement for nurses to agree with the ICU decisions, there seems to be a strong desire within the intensive care team that moral consensus should be achieved in the interests of good patient care. Intensive care relies on the integrity of the team and the unfailing functioning of teamwork. Consequently, achieving this, it seems, is more important than other temporary lapses in interprofessional relations and disagreements over treatment in individual cases. Consensus is important and its achievement is a central, day to day working arrangement for insuring the solidarity of the team.     

From ‘Implications’ to ‘Dimensions’: Science, Medicine and Ethics in Society

Much bioethical scholarship is concerned with the social, legal and philosophical implications of new and emerging science and medicine, as well as with the processes of research that under-gird these innovations. Science and technology studies (STS), and the related and interpenetrating disciplines of anthropology and sociology, have also explored what novel technoscience might imply for society, and how the social is constitutive of scientific knowledge and technological artefacts. More recently, social scientists have interrogated the emergence of ethical issues: they have documented how particular matters come to be regarded as in some way to do with ‘ethics’, and how this in turn enjoins particular types of social action. In this paper, I will discuss some of this and other STS (and STS-inflected) literature and reflect on how it might complement more ‘traditional’ modes of bioethical enquiry. I argue that STS might (1) cast new light on current bioethical issues, (2) direct the gaze of bioethicists towards matters that may previously have escaped their attention, and (3) indicate the import not only of the ethical implications of biomedical innovation, but also how these innovative and other processes feature ethics as a dimension of everyday laboratory and clinical work. In sum, engagements between STS and bioethics are increasingly important in order to understand and manage the complex dynamics between science, medicine and ethics in society.     

Ethical climate, ethics stress, and the job satisfaction of nurses and social workers in the United States

Nurses and social workers are fundamental to the delivery of quality health care across the continuum of care. As health care becomes increasingly complex, these providers encounter difficult ethical issues in patient care, perceive limited respect in their work, and are increasingly dissatisfied. However, the link between ethics-related work factors and job satisfaction and intent-to-leave one's job has rarely been considered. In this paper, we describe how nurses and social workers in the US view the ethical climate in which they work, including the degree of ethics stress they feel, and the adequacy of organizational resources to address their ethical concerns. Controlling for socio-demographics, we examined the extent to which these factors affect nurses and social workers' job satisfaction and their interest in leaving their current position. Data were from self-administered mail questionnaires of 1215 randomly selected nurses and social workers in four census regions of the US. Respondents reported feeling powerless (32.5%) and overwhelmed (34.7%) with ethical issues in the workplace and frustration (52.8%) and fatigue (40%) when they cannot resolve ethical issues. In multivariate models, a positive ethical climate and job satisfaction protected against respondents' intentions to leave as did perceptions of adequate or extensive institutional support for dealing with ethical issues. Black nurses were 3.21 times more likely than white nurses to want to leave their position. We suggest several strategies to reduce ethics stress and improve the ethical climate of the workplace for nurses and social workers.     

Managing ethical uncertainty: implicit normativity and the sociology of ethics

This article illustrates and discusses the idea of ‘implicit normativity’, and specifically its relevance to the management of ethical uncertainty. In particular I consider (i) the role implicit normativity plays in masking and containing potential ethical uncertainty and (ii) the contrast and boundary between implicit normativity and ‘overt ethics’ where ethical contestation – as well as particular processes and agents – are highlighted as salient. Using examples I show how the idea of implicit normativity can be applied not only to specific practices but also to whole fields of practice. The notion of ‘moral settlements’ – along with the explanatory role of the threat of ‘chaos’ – is introduced and elucidated to develop these points. I argue that attention to the management of ethical uncertainty shows the critically important contribution that an ambitious sociology of ethics can make to clinical ethics, including by helping to formulate and drive home questions about the ‘ethics of ethics’. The account presented here has resonances with work that seeks to use sociological lenses to move beyond conventional bioethics, including Petersen's (2013) call for a ‘normative sociology’.     

Practising medicine in two countries: South African physicians in Canada

This qualitative study examines the pre‐ and post‐migration practice experiences of 73 physicians trained in South Africa who have relocated to Canada. The aims are to explore the workings of two different healthcare systems from an insider standpoint and to address the medical autonomy debate as it relates to international medical graduates (IMGs). While study respondents reported practice frustrations in both countries, they generally preferred working in a socialised health insurance environment that grants wider accessibility than a two‐tiered system that favours a privileged few. Concerns such as family safety and opportunities for children also contributed to more satisfaction with Canada. We discuss our findings in relation to a broader international context and the sociological literature on medical autonomy. We argue that IMGs face different autonomy issues from other physicians and stress the need to broaden sociological inquiry of medical work by investigating how autonomy interfaces with other neglected aspects of physicians’ work and non‐work lives.     

Translating psychosocial insight into ethical discussions supportive of families in end-of-life decision-making

A large number of Americans would rather rely on family and friends more than their physicians about end-of-life care and decisions. Moving beyond traditional clinical ethics and its dyadic focus on the physician-patient relationship, this article presents an approach to ethical decision-making at the end of life that is more inclusive of the patient's family and has the potential to advance social work practice in end-of-life care. Initial attention is given to how psychosocial and bioethical perspectives and practices interact to shape understanding of moral issues in end-of-life decisions. Morally relevant principles are then adapted from contextual therapy as being useful for including more of a family focus and viewing ethical decision-making at the end of life as a family process. Specifically, focus is on exploring the ethical dynamics of family systems that impact the decision-making process and translating psychosocial insight into ethical discussions that are supportive of families. The case of a patient with sudden and unexpected brain death and without advance directives demonstrates one family's unresolved grief and illustrates how its members were helped to reason morally about end-of-life choices. Contributions of a social worker and bioethicist are illustrated.     

Experiencing everyday ethics in context: Frontline data collectors perspectives and practices of bioethics

Data collectors play a vital role in producing scientific knowledge. They are also an important component in understanding the practice of bioethics. Yet, very little attention has been given to their everyday experiences or the context in which they are expected to undertake these tasks. This paper argues that while there has been extensive philosophical attention given to ‘the what’ and ‘the why’ in bioethics – what action is taken place and why – these should be considered along ‘the who’ – who are the individuals tasked with bioethics and what can their insights bring to macro-level and abstract discussions of bioethics. This paper will draw on the philosophical theories of Paul Ricoeur which compliments a sociological examination of data collectors experiences and use of their agency coupled with a concern for contextual and institutional factors in which they worked.In emphasising everyday experiences and contexts, I will argue that data collectors' practice of bioethics was shaped by their position at the frontline of face-to-face interactions with medical research participants and community members, alongside their own personal ethical values and motivations. Institutional interpretations of bioethics also imposed certain parameters on their bioethical practice but these were generally peripheral to their sense of obligation and the expectations conferred in witnessing the needs and suffering of those they encountered during their quotidian research duties.This paper will demonstrate that although the principle of autonomy has dominated discussions of bioethics and gaining informed consent seen as a central facet of ethical research by many research institutions, for data collectors this principle was seldom the most important marker of their ethical practice. Instead, data collectors were concerned with remedying the dilemmas they encountered through enacting their own interpretations of justice and beneficence and imposing their own agency on the circumstances they experienced. Their practice of bioethics demonstrates their contribution to the conduct of research and the shortcomings of an over-emphasis on autonomy.     

Family consent and the pursuit of better medicines through genetic research.

Rapid changes in the science and technology related to genetic research are challenging scientists, health care providers, ethicists, regulators, patient groups, and the pharmaceutical industry to keep pace with ethically grounded, workable guidelines for both the research and clinical applications of human genetics. We describe the genetic research being conducted by one pharmaceutical company (GlaxoSmithKline) and how the company is addressing the ethical, legal, and social issues surrounding this research; discuss an industry working group's attempt to advance pharmacogenetic research by openly addressing and disseminating information on related ethical, legal, and regulatory issues; identify scientific and ethical differences among various types of genetic research; discuss potential implications of family consent on subject privacy and autonomy, data collection, and study conduct; and suggest points to consider when study sponsors, investigators, and ethics committees evaluate research proposals. Public and expert opinion regarding informed consent in genetic research is evolving as a result of increased education, discussion, and understanding of the relevant issues. Five years ago, there was strong support for anonymity in genetic research as a privacy safeguard. Now, an increasingly popular school of thought advocates against anonymity to preserve an individual's ability to withdraw and, if desired, access research results. It is important to recognize this evolution and address consent issues in a reasoned, practical, and consistent way, including input from patients and their families, health care providers, ethicists, scientists, regulatory bodies, research sponsors, and the lay community. Responsibility for assessing issues related to family consent for research should remain with local investigators, ethics boards, and study sponsors. A "one-size-fits-all" perspective in the form of new regulations, for example, would likely be a disservice to all.     

医学伦理视角下的《急诊室故事》解读

《急诊室故事》作为一档医疗纪实题材真人秀节目，全方位无死角地拍摄医院急诊室发生的故事。医疗作为一个特殊的行业，急诊室作为一个特殊的地点，其拍摄中所产生的医学伦理问题无法回避，需要正确引导。拍摄过程中牵涉到的医院、患者、家属、医护、工勤等社会中不同角色的人群，并且引发错综复杂的伦理关系更需要从医学伦理学的角度加以规范。从拍摄过程、医学传播角度和医疗实践三个方面阐述与《急诊室故事》相关的医学伦理问题。     

Ethical issues in occupational medicine practice: knowledge and attitudes of occupational physicians

Views on ethical conduct in occupational medicine practice canvary from country to country and even between occupational healthpractitioners. However, there are many areas of common agreement,and this is apparent on comparing guidance documents on ethicsproduced by several different organizations. The usefulnessof these documents will depend in part on how aware practitionersare of their existence. A standardized questionnaire administeredto 70 occupational physicians in the Netherlands, UK, and Singaporeshowed that there was a lack of awareness of guidance documentson ethics, even for publications from their own countries. Onlyfive of the 70 respondents consulted an ethics document in thepast year. In addition to publications, other avenues were usedfor advice on ethical issues. There was a difference in opinionbetween the physicians from Singapore and those from the twoEuropean countries on whether specific occupational health activitieswere ethical. These findings reinforce the need for internationalguidance on ethics to take into account differences in attitudesand practice between countries. On many issues there was nounanimity of opinion, even between occupational physicians fromthe same country. This may be an indication of the complexityof ethical matters, and provides a rationale for publishingguidance on ethics in occupational medicine.     

Ethics,risk, and patient‐centered care: How collaboration between clinical ethicists and risk management leads to respectful patient care

Patient‐centered care is driven in part by the ethical principle of autonomy and considers patients' cultural traditions, personal preferences, values, family situations, and lifestyles. Patient decision‐making capacity, surrogate decision making with or in the absence of a patient's advance directive, and the right to refuse treatment are three patient‐care issues that are central to the work done by both the risk manager and the clinical ethicist that have strong relevance to patient‐centered care. This article discusses these three issues briefly and offers two challenging case studies involving patient‐centered care that illustrate how a clinical ethics consultation may help to avert the escalation that can lead to a tort claim.