REFLECTIVE EQUILIBRIUM AND EMPIRICAL DATA: THIRD PERSON MORAL EXPERIENCES IN EMPIRICAL MEDICAL ETHICS

In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached.     

'You don't make genetic test decisions from one day to the next'--using time to preserve moral space

The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient-centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal 'depth of field'. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics.     

Research versus practice: The dilemmas of research ethics in the era of learning health‐care systems

In this article we attempt to answer the question of how the ethical and conceptual framework (ECF) for a learning health‐care system (LHS) affects some of the main controversies in research ethics by addressing five key problems of research ethics: (a) What is the difference between practice and research? (b) What is the relationship between research ethics and clinical ethics? (c) What is the ethical relevance of the principle of clinical equipoise? (d) Does participation in research require a higher standard of informed consent than the practice of medicine? and (e) What ethical principle should take precedence in medicine? These questions allow us to construct two opposite idealized positions on the distinction between research and practice: the integration model and the segregation model of research and practice. We then compare the ECF for an LHS with these two idealized positions. We argue that the ECF for a LHS does not, in fact, solve these problems, but that it is a third, separate position in the relationship between research ethics and clinical ethics. Moreover, we suggest that the ECF for a LHS raises new ethical problems that require additional ethical analysis and justification. Our article contributes to the discussion on the relationship between research ethics and clinical ethics, revealing that although a learning health‐care system may significantly change the landscape of health care, some ethical dilemmas still require resolving on both theoretical and policy‐making levels.     

TWO CONCEPTS OF EMPIRICAL ETHICS

The turn to empirical ethics answers two calls. The first is for a richer account of morality than that afforded by bioethical principlism, which is cast as excessively abstract and thin on the facts. The second is for the facts in question to be those of human experience and not some other, unworldly realm. Empirical ethics therefore promises a richer naturalistic ethics, but in fulfilling the second call it often fails to heed the metaethical requirements related to the first. Empirical ethics risks losing the normative edge which necessarily characterizes the ethical, by failing to account for the nature and the logic of moral norms. I sketch a naturalistic theory, teleological expressivism (TE), which negotiates the naturalistic fallacy by providing a more satisfactory means of taking into account facts and research data with ethical implications. The examples of informed consent and the euthanasia debate are used to illustrate the superiority of this approach, and the problems consequent on including the facts in the wrong kind of way.     

Balancing the needs and preferences of humans against concerns for fishes: how to handle the emerging ethical discussions regarding capture fisheries?

How can stakeholders within the fisheries community engage in constructive ethical discussions? Drawing on experiences from previous debates surrounding the human use of animals, this paper presents a proactive approach whereby stakeholders can create a framework for ethical discussion of capture fisheries.     

Public consultation in ethics an experiment in representative ethics

Genome Canada has funded a research project to evaluate the usefulness of different forms of ethical analysis for assessing the moral weight of public opinion in the governance of genomics. This paper will describe a role of public consultation for ethical analysis and a contribution of ethical analysis to public consultation and the governance of genomics/biotechnology. Public consultation increases the robustness of ethical analysis with a more diverse set of moral experiences. Consultation must be carefully and respectfully designed to generate sufficiently diverse and rich accounts of moral experiences. Since dominant groups tend to define ethical or policy issues in a manner that excludes some interests or perspectives, it is important to identify the range of interests that diverse publics hold before defining the issue and scope of the discussion and the premature foreclosure of ethical dialogue. Consequently, a significant contribution of ethical dialogue strengthened by social analysis is to consider the context and non-policy use of power to govern genomics and to sustain social debate on enduring ethical issues.     

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.     

Weaponizing Principles: Clinical Ethics Consultations & the Plight of the Morally Vulnerable

Internationally, there is an on‐going dialogue about how to professionalize ethics consultation services (ECSs). Despite these efforts, one aspect of ECS‐competence that has received scant attention is the liability of failing to adequately capture all of the relevant moral considerations in an ethics conflict. This failure carries a high price for the least powerful stakeholders in the dispute. When an ECS does not possess a sophisticated dexterity at translating what stakeholders say in a conflict into ethical concepts or principles, it runs the risk of naming one side's claims as morally legitimate and decrying the other's as merely self‐serving. The result of this failure is that one side in a dispute is granted significantly more moral weight and authority than the other. The remedy to this problem is that ECSs learn how to expand the diagnostic moral lens they employ in clinical ethics conflicts.     

From applied ethics to empirical ethics to contextual ethics

Bioethics became applied ethics when it was assimilated to moral philosophy. Because deduction is the rationality of moral philosophy, subsuming facts under moral principles to deduce conclusions about what ought to be done became the prescribed reasoning of bioethics, and bioethics became a theory comprised of moral principles. Bioethicists now realize that applied ethics is too abstract and spare to apprehend the specificity, particularity, complexity and contingency of real moral issues. Empirical ethics and contextual ethics are needed to incorporate these features into morality, not just bioethics. The relevant facts and features of problems have to be identified, investigated and framed coherently, and potential resolutions have to be constructed and assessed. Moreover, these tasks are pursued and melded within manifold contexts, for example, families, work and health care systems, as well as societal, economic, legal and political backgrounds and encompassing worldviews. This naturalist orientation and both empirical ethics and contextual ethics require judgment, but how can judgment be rational? Rationality, fortunately, is more expansive than deductive reasoning. Judgment is rational when it emanates from a rational process of deliberation, and a process of deliberation is rational when it uses the resources of non‐formal reason: observation, creative construction, formal and informal reasoning methods and systematic critical assessment. Empirical ethics and contextual ethics recognize that finite, fallible human beings live in complex, dynamic, contingent worlds, and they foster creative, critical deliberation and employ non‐formal reason to make rational moral judgments.     

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.     

Empirical research in clinical ethics: The ‘committed researcher’ approach

After the ‘empirical turn’ in bioethics, few specific approaches have been developed for doing clinical ethics research in close connection with clinical decision-making on a daily basis. In this paper we describe the ‘committed researcher’ approach to research in clinical ethics that we have developed over the years. After comparing it to two similar research methodological approaches, the ‘embedded researcher’ and ‘deliberative engagement’, we highlight its main features: it is patient-oriented, it is implemented by collegial and multidisciplinary teams, it uses an ethical grid to build the interview guide, and it is geared towards bringing the results to bear on the public debate surrounding the issue at stake. Finally, we position our methodological approach with respect to the ‘is vs. ought’ distinction. We argue that our ‘commitment researcher’ approach to clinical ethics research takes concerned people’s life-building values as the main data, and compares them to the larger normative framework underlying the medical practice at stake.     

How rational should bioethics be? The value of empirical approaches

Rational justification of claims with empirical content calls for empirical and not only normative philosophical investigation. Empirical approaches to bioethics are epistemically valuable, i.e., such methods may be necessary in providing and verifying basic knowledge about cultural values and norms. Our assumptions in moral reasoning can be verified or corrected using these methods. Moral arguments can be initiated or adjudicated by data drawn from empirical investigation. One may argue that individualistic informed consent, for example, is not compatible with the Asian communitarian orientation. But this normative claim uses an empirical assumption that may be contrary to the fact that some Asians do value and argue for informed consent. Is it necessary and factual to neatly characterize some cultures as individualistic and some as communitarian? Empirical investigation can provide a reasonable way to inform such generalizations. In a multi-cultural context, such as in the Philippines, there is a need to investigate the nature of the local ethos before making any appeal to authenticity. Otherwise we may succumb to the same ethical imperialism we are trying hard to resist. Normative claims that involve empirical premises cannot be reasonable verified or evaluated without utilizing empirical methods along with philosophical reflection. The integration of empirical methods to the standard normative approach to moral reasoning should be reasonably guided by the epistemic demands of claims arising from cross-cultural discourse in bioethics.     

Conclusion: Energy ethics and ethical worlds

What happens when the effects of our ethical actions stretch beyond, often far beyond, first- and second-person phenomena? What happens when one person's richly textured ethical world is another's profound violation? Energy offers a particularly useful empirical terrain on which to think through the questions posed by ethical worlds. Ethical worlds gesture both to the supra-individual, supra-present contexts in which we all craft quotidian ethics, and to the expansive geographies and timescapes in which the effects of our ethical practices ramify. Ethical worlds, fields, or landscapes are not bordered by first- or second-person experiences, but rather they intersect and interfere with one another often at great distance, often over multiple generations, and certainly not equally. Ethical practices in more powerful fields spill out, invade, and give shape to ethical practices in other ethical fields. What does it mean to start to see and feel and analyse at these ethical crossroads? In particular, what might it mean to acknowledge that structure, power, and interest – which are too often arrayed against close ethnographic attention to individual and shared experience – are not ‘larger forces’ but other ethical worlds, equally amenable to ethnographic attention?     

转化医学研究中生命伦理学辩护的现况分析与前瞻思考

转化医学作为一门新兴学科,运用多学科交叉策略来推动医学发展,从临床实践中发现问题,将其凝练成科学问题进行基础医学研究,再将研究成果应用到疾病诊断、治疗和预防过程中,使其真正发挥作用,是一个从基础医学到临床应用的双向进程。转化医学已逐步融入各个学科,并在干细胞研究、生物标志物、细胞信号转导、药物及器具研发及个体化医学等各个领域发挥重要作用。随着转化医学研究深入,一些临床试验势必对人体存在一定伤害和潜在危险,存在各种伦理问题。虽说科学研究与伦理道德是一对相互冲击的矛盾,但两者在总体上又是一致的,共同决定着社会前进步伐。科研的重大进步必然会对伦理道德提出更高要求,而伦理道德的高标准又规范、引导、促进科学研究朝着正确方向迈进,两者相辅相成。鉴于伦理辩护对于转化医学研究强有力的支撑,建议在转化医学研究中能进一步完善伦理监管体系,发挥机构伦理委员会的功效,持续加大伦理培训的力度,强化研究人员的伦理道德修养,从而为转化医学的发展夯实人文基础。     

A method of Reflexive Balancing in a Pragmatic,Interdisciplinary and Reflexive Bioethics

In recent years there has been a wealth of literature arguing the need for empirical and interdisciplinary approaches to bioethics, based on the premise that an empirically informed ethical analysis is more grounded, contextually sensitive and therefore more relevant to clinical practice than an ‘abstract’ philosophical analysis. Bioethics has (arguably) always been an interdisciplinary field, and the rise of ‘empirical’ (bio)ethics need not be seen as an attempt to give a new name to the longstanding practice of interdisciplinary collaboration, but can perhaps best be understood as a substantive attempt to engage with the nature of that interdisciplinarity and to articulate the relationship between the many different disciplines (some of them empirical) that contribute to the field. It can also be described as an endeavour to explain how different disciplinary approaches can be integrated to effectively answer normative questions in bioethics, and fundamental to that endeavour is the need to think about how a robust methodology can be articulated that successfully marries apparently divergent epistemological and metaethical perspectives with method. This paper proposes ‘Reflexive Bioethics’ (RB) as a methodology for interdisciplinary and empirical bioethics, which utilizes a method of ‘Reflexive Balancing’ (RBL). RBL has been developed in response to criticisms of various forms of reflective equilibrium, and is built upon a pragmatic characterization of Bioethics and a ‘quasi‐moral foundationalism’, which allows RBL to avoid some of the difficulties associated with RE and yet retain the flexible egalitarianism that makes it intuitively appealing to many.