Theory and practice of clinical ethics support services: narrative and hermeneutical perspectives

In this paper we introduce narrative and hermeneutical perspectives to clinical ethics support services (CESS). We propose a threefold consideration of 'theory' and show how it is interwoven with 'practice' as we go along. First, we look at theory in its foundational role: in our case 'narrative ethics' and 'philosophical hermeneutics' provide a theoretical base for clinical ethics by focusing on human identities entangled in stories and on moral understanding as a dialogical process. Second, we consider the role of theoretical notions in helping practitioners to understand their situation in clinical ethics practice, by using notions like 'story', 'responsibility', or 'vulnerability' to make explicit and explain their practical experience. Such theoretical notions help us to interpret clinical situations from an ethical perspective and to foster moral awareness of practitioners. And, thirdly, we examine how new theoretical concepts are developed by interpreting practice, using practice to form and improve our ethical theory. In this paper, we discuss this threefold use of theory in clinical ethics support services by reflecting on our own theoretical assumptions, methodological steps and practical experiences as ethicists, and by providing examples from our daily work. In doing so, we illustrate that theory and practice are interwoven, as theoretical understanding is dependent upon practical experience, and vice-versa.     

HIV testing of pregnant women: an ethical analysis

Recent global advances in available technology to prevent mother-to-child HIV transmission necessitate a rethinking of contemporary and previous ethical debates on HIV testing as a means to preventing vertical transmission. In this paper, we will provide an ethical analysis of HIV-testing strategies of pregnant women. First, we argue that provider-initiated opt-out HIV testing seems to be the most effective HIV test strategy. The flip-side of an opt-out strategy is that it may end up as involuntary testing in a clinical setting. We analyse this ethical puzzle from a novel perspective, taking into account the moral importance of certain hypothetical preferences of the child, as well as the moral importance of certain actual preferences of the mother. Finally, we balance the conflicting concerns and try to arrive at an ethically sound solution to this dilemma. Our aim is to introduce a novel perspective from which to analyse testing strategies, and to explore the implications and possible benefits of our proposal. The conclusion from our analysis is that policies that recommend provider-initiated opt-out HIV testing of pregnant mothers, with a risk of becoming involuntary testing in a clinical setting, are acceptable. The rationale behind this is that the increased availability of very effective and inexpensive life-saving drugs makes the ethical problems raised by the possible intrusiveness of HIV testing less important than the child's hypothetical preferences to be born healthy. Health care providers, therefore, have a duty to offer both opt-out HIV testing and available PMTCT (preventing mother-to-child transmission) interventions.     

Principlism and the ethical appraisal of clinical trials

For nearly two decades, the process of reviewing the ethical merit of research involving human subjects has been based on the application of principles initially described in the U.S. National Commission's Belmont Report, and later articulated more fully by Beauchamp and Childress in their Principles of Biomedical Ethics. Recently, the use of ethical principles for deliberating about moral problems in medicine and research, referred to in the pejorative sense as "principlism", has come under scrutiny. In this paper we argue that these principles can provide a foundation for the source of ethical appraisal of human research, but are not themselves wholly adequate for this purpose. Therefore, we further propose that (1) principles should be understood as heuristics that can be "specified" as described by De Grazia (1992), and (2) that the principle-based approach should be supplemented by formally incorporating "sensitivity to context" into the evaluation of clinical trials.     

Video‐recording complex health interactions in a diverse setting: Ethical dilemmas,reflections and recommendations

Video‐recording healthcare interactions provides important opportunities for research and service improvement. However, this method brings about tensions, especially when recording sensitive topics. Subsequent reflection may compel the researcher to engage in ethical and moral deliberations. This paper presents experiences from a South African genetic counselling study which made use of video‐recordings to understand communicative processes in routine practice. Video‐recording as a research method, as well as contextual and process considerations are discussed, such as researching one's own field, issues of trust and anonymity, the challenge of providing true informed consent and capturing details which may cause psychological harm. Several recommendations for research practice in diverse healthcare settings are made. This includes the value of reflective pieces, the importance of retrospective consent, disclosure of the limitations to anonymity, as well as the collective responsibility of those involved to produce ethical research. These recommendations have value for genetic counselling and other healthcare fields.     

International service learning programs: ethical issues and recommendations

Inequities in global health are increasingly of interest to health care providers in developed countries. In response, many academic healthcare programs have begun to offer international service learning programs. Participants in these programs are motivated by ethical principles, but this type of work presents significant ethical challenges, and no formalized ethical guidelines for these activities exist. In this paper the ethical issues presented by international service learning programs are described and recommendations are made for how academic healthcare programs can carry out international service learning programs in a way that minimizes ethical conflicts and maximizes benefits for all stakeholders. Issues related to project sustainability and community involvement are emphasized.     

The challenge of including social and ethical aspects in the development of nanobiotechnology

Nanotechnology as an enabling technology for many future medical applications touches on issues such as sensitivity of genetic information, the gap between diagnosis and therapy, health care resources and tensions between holistic and functional medicine. On the other hand nanotechnology will add a new dimension to the bio (human) and non-bio (machine) interface such as brain chips or implants, which eventually might raise new ethical issues specific to NanoMedicine. This requires careful analysis of ethical aspect in view of existing standards and regulations by ethics committees at the European scale. At the same time new nanomedical inventions have to be evaluated for new ethical aspects by Ethical, Legal and Social Aspects — specialists. The most crucial point in this regard is an early proactive analysis of new technological developments to identify and discuss possible issues as soon as possible. This requires a close collaboration and co-learning of technology developers and ethics specialists assisted by communication experts to ensure open and efficient information of the public about ethical aspects (old or new) related to nanomedicine. This co-evolution will ensure a socially and ethically accepted development of innovative diagnostic and therapeutic tools in NanoMedicine.     

Managing ethical challenges around misattributed parentage within the clinical context: Insights from an African moral theory

This study argues the thesis that a set of guidelines ‐ firmly rooted in a particular interpretation of African moral theory, specifically, Ubuntu – will do a better job than current medical ethics frameworks, in addressing ethical challenges around misattributed parentage within the clinical context. Incidental information such as information with significant personal/health implications raises unique challenges for medical professionals. For example, withholding information of misattributed paternity accidentally discovered in clinical interactions may be seen by a patient as a violation of his/her right‐to‐know. Contrarily, disclosure where a patient has not requested information – or where establishing paternity is not the purpose of clinical visit/interaction – may be taken by the patient as a violation of his/her right ‘not‐to‐know’. Resolving these challenges remain a herculean task. African moral theory contains an under‐emphasized value for addressing such ethical challenges around misattributed parentage in the field of transplant. I seek to contribute this knowledge; and enhance clinician‐patient relationship. This study builds off three completed systematic reviews, which aimed to answer the following questions: “what are the ethical challenges regarding information health professionals face within the clinical contest?” and “what core aspects (or common themes) of Ubuntu can be identified in existing literature describing the same?” In this present study, I applied the definition of Ubuntu which captures the core aspects of the theory in ethical literature on the same, to address ethical issues around unsought information of misattributed parentage in the field of transplant.     

Health care and the principle of fair equality of opportunity: a report from The Netherlands

In The Netherlands, the public funding of a number of health care services is controversial. What can we learn from this about the moral concerns that underlie these judgements? And, if there is anything to learn, can we use this improved understanding to scrutinise the adequacy of particular decisions concerning the public funding of health care services? In the present paper, I will analyse three cases: corrective surgey, In Vitro Fertilisation and liver transplantation. I will summarise the arguments that have been used to support or to challenge the public funding of these services. I will then assess the merits of Daniels’fair equality of opportunity account of justice in health care. Can this account improve our understanding of the moral concerns underlying our judgements about the public funding of these services? Can it serve to scrutinise the adequacy of particular decisions that are made concerning the public funding of health care services? My answer to both questions will be a qualified yes. Daniels’account can provide guidance, but not because we can deductively infer from it what is right and what is wrong. Instead, I will argue for a more casuistic use of the concept of fair equality of opportunity.     

Healthcare professionals as gatekeepers in research involving refugee survivors of sexual torture: An examination of the ethical issues

This paper examines the ethical issues that arise when healthcare providers act as gatekeepers to research involving vulnerable populations. Traumatised refugees serve as an example of this subset of research participants. Highlighting the particular vulnerabilities of this group, we argue that specific ethical considerations are required that go beyond the conventional research approaches. While gatekeeping responds to some of those vulnerabilities, it risks wronging through unwarranted paternalism. Instead, we will propose that a relational ethics of justice and care serves as a more appropriate framework for responding to the challenges of research involving traumatised refugees. Specifically, such a framework allows us to reflect more deeply on the role of the gatekeeper. In conclusion, we recommend that clinicians and researchers collaborate with survivors’ advisory groups in the development of specific research ethical guidelines.     

Medicare prospective payment--the ethical implications of converging clinical and financial decisions in long-term care

The principles of bioethics indicate that Prospective Payment has a moral dimension. Because Prospective Payment unifies clinical and financial decisions, it poses problems for long-term care facilities, especially those motivated by a humanitarian mission rather than financial considerations. This article outlines how Prospective Payment conflicts with the ethical principles of respect for persons, autonomy, justice, promise keeping, and fidelity.     

Ethical dilemmas in early detection of dementia. An inventory of moral intuitions in practice

In this article we present an inventory of the moral intuitions of the health care workers who work in the field of early detection of dementia. The effects of pharmacological treatment and professional care and support may improve when dementia is detected in an early stage. Furthermore, the patient (and his family) can prepare themselves for the period to come. Health care workers recognize moral problems and tensions concerning early detection that are related to the question whether persons will benefit from knowledge in an earlier stage of dementia, because this knowledge can be a heavy burden. We asked general practitioners, home care workers, employees of the so-called 'Memory clinic' and specialists, what ethical intuitions they recognize in practice. They mentioned the following questions: when are health care professionals allowed to take initiative, is causing worries and concerns problematic, and should a diagnosis always to be told? We conclude after a first analysis that many moral questions derive from the fact that many health care professionals lack knowledge of the wishes and interests of the elderly. At the same time they try to justify their actions on the (presupposed) consent of the elderly person. We suggest that the general norm 'only act when the patient wants to be helped' in health care should also apply to detection of dementia, although it should not be taken too strictly. Another justification for early detection can be found in the benefits for the elderly people, when their wishes are no longer expressed.     

Monological versus dialogical consciousness: two epistemological views on the use of theory in clinical ethical practice

In this article, we argue that a critical examination of epistemological and anthropological presuppositions might lead to a more fruitful use of theory in clinical-ethical practice. We differentiate between two views of conceptualizing ethics, referring to Charles Taylors' two epistemological models: 'monological' versus 'dialogical consciousness'. We show that the conception of ethics in the model of 'dialogical consciousness' is radically different from the classical understanding of ethics in the model of 'monological consciousness'. To reach accountable moral judgments, ethics cannot be conceptualized as an individual enterprise, but has to be seen as a practical endeavor embedded in social interactions within which moral understandings are being negotiated. This view has specific implications for the nature and the role of ethical theory. Theory is not created in the individual mind of the ethicist; the use of theory is part of a joint learning process and embedded in a cultural context and social history. Theory is based upon practice, and serves practical purposes. Thus, clinical ethics support is both practical and theoretical.     

Integrating anticipated nutrigenomics bioscience applications with ethical aspects

Nutrigenomics is a subspecialty of nutrition science which aims to understand how gene-diet interactions influence individuals' response to food, disease susceptibility, and population health. Yet ethical enquiry into this field is being outpaced by nutrigenomics bioscience. The ethical issues surrounding nutrigenomics face the challenges of a rapidly evolving field which bring forward the additional dimension of crossdisciplinary integrative research between social and biomedical sciences. This article outlines the emerging nutrigenomics definitions and concepts and analyzes the existing ethics literature concerning personalized nutrition and presents "points to consider" over ethical issues regarding future nutrigenomics applications. The interest in nutrigenomics coincides with a shift in emphasis in medicine and biosciences toward prevention of future disease susceptibilities rather than treatment of already established disease. Hence, unique ethical issues emerge concerning the extent to which nutrigenomics can alter our relation to food, boundaries between health and disease, and the folklore of medical practice. Nutrigenomics can result in new social values, norms, and responsibilities for both individuals and societies. Nutrigenomics is not only another new application of "-omics" technologies in the context of gene-diet interactions. Nutrigenomics may fundamentally change the way we perceive human illness while shifting the focus and broadening the scope of health interventions from patients to healthy individuals. In resource- and time-limited healthcare settings, this creates unique ethical dilemmas and distributive justice issues. Ethical aspects of nutrigenomics applications should be addressed proactively, as this new science develops and increasingly coalesces with other applications of genomics in medicine and public health.     

El anciano con enfermedad avanzada de órgano. Consideraciones desde la geriatría,la medicina paliativa y la bioética

Objective

To analyze the literature as regards the knowledge, skills and attitudes that these disciplines can provide in improving technical, ethical and human quality health care in the elderly with advanced organ failure, multimorbidity, frailty and progressive dementia.

Material and methods

A comprehensive review focused on available references on the interrelationship between geriatric medicine and palliative medicine, education in bioethics, prognostic tools, functional status, and the humanization of health care.

Results

Advance care planning, comprehensive geriatric assessment, the study of the values of the patient and their introduction in decision-making process, as well as the need to promote moral, care, and healthcare organizational ethics, are essential elements to achieve this objective.

Conclusions

Practitioners and healthcare organizations should seek excellence as a moral requirement. To achieve this, there is a priority to acquire virtues of care and fundamental concepts of geriatric and palliative medicine, assessing functional status, advance care planning and patient/family needs as essential issues to protect, care for and promote them in all care settings.     

Recommendations for the ethical development and use of medical decision-support systems

Medical decision support systems (MDSS) play an increasingly important role in medical practice. By assisting physicians with making clinical decisions, MDSS are expected to improve the quality of medical care. However, there are also concerns that malfunctioning or inappropriate use of MDSS could jeopardize the well-being of the patient. While several authors have already discussed ethical issues arising with the use of computer-assisted medical decision making, there is still no consensus about the ethically appropriate use of MDSS. Based on a review and synthesis of previous relevant work, this paper proposes a comprehensive set of recommendations for the ethical development and application of MDSS.     

Ethics and cultural diversity--a framework for decision-making

Believing that healthcare outcomes will be more satisfying if the patients' cultural knowledge and values are understood and integrated appropriately in care planning, the author proposes a culturally competent ethical decision making model based on human rights--the fundamental right of individuals, families, groups, and populations to healthcare that is meaningful, supportive, and beneficial--and a reconceptualization of ethical principles to include the values and assumptions of clients. The ideal result is culturally congruent healthcare in which practitioners learn about their clients' lifeways and work with them to find satisfying ways to resolve clinical and ethical issues.     

Ethical challenges at the science-policy interface: an ethical risk assessment and proposition of an ethical infrastructure

Developing an interface between knowledge holders, stakeholders and decision makers on biodiversity issues, just as any science-policy interface, will face many challenges. In the crucial endeavour to tackle all those challenges, determining an ethical course of actions will be essential to the prestige and credibility of such an interface. The paper identifies and assesses potential ethical risks that may arise in interactions between science, society and policy and uses the Network of Knowledge (NoK) process as an example to show how an ethical infrastructure could be developed for minimizing the ethical risks and their potential consequences. Indeed, when various actors from different spheres (politics, academia, lobbyism, media, etc.) are called upon to interact within one process as complex as the NoK, the integrity and credibility of the latter are at high risk of being compromised if the ethical risks are not adequately addressed. In order to limit those risks, which science-policy interfaces such as IPCC and IPBES have already encountered, we propose to set up an ethical governance infrastructure that will guide (and regulate) interactions among internal actors of the NoK (knowledge coordination body, secretariat, expert working groups, etc.) as well as with external actors (requesters, stakeholders, etc.). A thorough evaluation of the interaction between the actors for every step of the process is carried out and potential ethical risks are identified. Suggestions as to how the risks can be handled and prevented are presented and integrated as part of an ethical infrastructure. The main objective of the paper is to address how a science-policy interface and the scientific community as a whole would benefit from implementing ethical measures and instruments to help prevent sensitive issues and undesired consequences undermining credibility and legitimacy.     

Newborns in crisis: An outline of neonatal ethical dilemmas in humanitarian medicine

Newborn infants are among those most severely affected by humanitarian crises. Aid organisations increasingly recognise the necessity to provide for the medical needs of newborns, however, this may generate distinctive ethical questions for those providing humanitarian medical care. Medical ethical approaches to neonatal care familiar in other settings may not be appropriate given the diversity and volatility of humanitarian disasters, and the extreme resource limitations commonly faced by humanitarian aid missions. In this paper, we first systematically review existing guidelines relating to the treatment and resuscitation of newborns in humanitarian crises, finding little substantive ethical guidance for those providing humanitarian healthcare. We next draw on paradigm cases and published literature to identify and describe some of the major ethical questions common to these settings. We divide these questions into quality of life considerations, allocation of limited resources, and conflicting cultural norms and values. We finally suggest some preliminary recommendations to guide ethical decision‐making around resuscitation of newborns and withdrawal of treatment in humanitarian settings.     

Conceptual,methodological and ethical issues in genetic engineering (1989)

An introduction to the potential of gene therapy to alleviate illness and death particularly for many rare human genetic disorders and specific forms of cancer is presented. At present, genetic engineering, that is gene therapy to correct some of these disorders based on new molecular biology procedures is a possibility in the near future especially those with single gene mendelian inherited transmission. After a short, comprehensive overview about the molecular biology of genetic engineering, a presentation of many of the ethical issues now under discussion by the international scientific community, world govenmental agencies and concerned laymen about the complex and sensitive ethical issues is provided. A report about a case history of investigators in the United States who disregarded current restrictions emphasized the concern of the scientific community as well as the governmental agencies in maintaining stepwise, careful approach to the introduction of the new, molecular methodologies. The continued maintenance of many of these restrictions, suggested by some ethicists, even after the threat of uncontrolled biological disorder as a result of these new procedures was found to be erroneous is discussed and challenged.