Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor to determine who should (...) make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life. (shrink)

Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor to determine who should (...) make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life. (shrink)

Graeme Laurie stepped down from the Chair in Medical Jurisprudence at the University of Edinburgh in 2019. This edited collection pays tribute to his extraordinary contributions to the field. Graeme has often spoken about the importance of 'legacy' in academic work and has forged a remarkable intellectual legacy of his own, notably through his work on genetic privacy, human tissue and information governance, and on the regulatory salience of the concept of liminality. The essays in this volume animate the (...) concept of legacy as lens of analysis for the study and practice of medical jurisprudence. In this light, legacy reveals characteristics of both benefit and burden, as both an encumbrance to and facilitator of the development of law, policy and regulation. Overall, the contributions reconcile the ideas of legacy and responsiveness and show that both dimensions are critical to achieve and sustain the health of medical jurisprudence itself as a dynamic, interdisciplinary and policy-engaged field of thinking. (shrink)

Dr Andorno and I have corresponded for some time on the question of a right not to know information. I enjoyed reading his paper and I am struck by the degree of agreement that we share. We both agree—for example, that unsolicited knowledge can be a burden which can significantly compromise an individual’s psychological integrity. We both share a desire to respect individual self determination. Also we each consider it reasonable for individuals to choose not to receive potentially harmful information. (...) I have already made these arguments, and more, elsewhere,1 but my starting point has not been autonomy, as advocated by Andorno, but rather privacy. In essence, my argument is that individuals enjoy, and are entitled to enjoy, a measure of psychological privacy which can be invaded by unwarranted disclosures of information.The reason that I prefer privacy to autonomy is not because I have any wish to “deny people the right to self determination”2 but rather because I perceive deficiencies in the autonomy model. Indeed, my approach and that of Andorno are not mutually exclusive; it is simply that my approach is broader and encompasses some of the harder cases which an autonomy based approach cannot help us to resolve. Thus, most of the substance of Andorno’s approach is subsumed within my model. I have—for example, no disagreement whatsoever with the view that if you have an indication that an individual would not wish to know then this wish should be respected. One might even establish novel means of discerning individuals’ wishes by establishing a register to record advance refusals, as Andorno …. (shrink)

Irish Supreme Court upholds paramountcy of parental right to determine a child's best interests at the expense of the rights of children themselvesCan a court force on parents who are careful and conscientious a view of their child's welfare which is rational, but quite contrary to the parents sincerely held but non-rational beliefs? The Supreme Court of Ireland has recently held that it cannot do so, and that the Irish Constitution requires that the right of the family to determine its (...) own direction must be respected except in the most narrow of circumstances, such as an immediate threat to the life of the child or risk of serious injury. The ruling leaves the assessment of a child's best interests to the wide discretion of parents, but at the same time fails to offer a means to resolve potential conflicts between the rights of the family and the rights of the child.FACTS OF THE CASEIn North Western Health Board v W 1 an action was brought by a local health board against the parents of 14 month old Paul, seeking a declaration that their refusal to submit their son to the heel prick test for phenylketonuria was a failure to vindicate their son's rights and that it would be lawful to proceed without parental consent. Phenylketonuria is a metabolic condition which can lead to severe and untreatable mental impairment if not detected in its early stages, but a simple variation in diet can stave off this outcome. While Paul's parents did not doubt the veracity of this medical opinion, nor indeed the importance of the test, they refused to subject their son to the invasive heel prick, offering instead samples of urine or hair, such that the test could be carried out by non-invasive means. These means, however, are considerably …. (shrink)

The act/omission distinction is used throughout Western legal systems, and indeed elsewhere, to police the boundaries between acceptable medical practice and unacceptable interventions designed to bring about the death of patients. Without exception, it has proved impossible to maintain the distinction with any clarity. In the United Kingdom, for example, it is lawful both to withhold and to withdraw from a patient treatment that the medical ….

This classic textbook focuses on medical law and its relationship with medical practice and modern ethics. It provides thorough coverage of all of the topics found on medical law courses, and in depth analysis of recent court decisions, encouraging students to think analytically about the subject.

This paper is a report on aconversation held between the authors andcentered on their shared interest inalternative methods of inquiry and evaluationin agriculture. The conversation was initiatedat the W. K. Kellogg Foundation and has evolvedthrough a series of long distanceconversations. Though not a verbatim transcriptof our conversations, this paper represents acomposite of both the face-to-face conversationand our stream of dialogue over the past year.Central to our discussion is an exploration ofthe parallels between the paradigm shift thatoccurred in evaluation in the (...) early 1980s andthe current agricultural paradigm shift beingpromoted by the W. K. Kellogg Foundation. Inthe course of this conversational paper, wesuggest not only that evaluators andresearchers should cultivate their capacity tohear and tell stories, but also thatagricultural programs and their long-termimpacts could benefit from different kinds ofevaluation efforts. From this perspective, theevaluation or research report is no longer anattempt to mirror reality, but rather it is anevocative story that asks the reader to engagethe storyline morally, emotionally,aesthetically, and intellectually, as well asfrom a social impact perspective. It is ourhope that this paper will serve as what Lather(1993) has called an ``incitement to discourse''in the disciplinary fields of agriculture andevaluation. (shrink)

Background Several jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using secondary health data or tissue. However, the concept of the public interest is not well defined in this context, which creates difficulties for institutions, institutional review boards and regulators trying to implement the criterion. Main text This paper clarifies how the public interest criterion can be defensibly deployed. We first explain the (...) ethical basis for requiring waivers to only be granted to studies meeting the public interest criterion, then explore how further criteria may be set to determine the extent to which a given study can legitimately claim to be in the public interest. We propose an approach that does not attempt to measure magnitude of benefit directly, but rather takes into account metrics that are more straightforward to apply. To ensure consistent and justifiable interpretation, research institutions and IRBs should also incorporate procedural features such as transparency and public engagement in determining which studies satisfy the public interest requirement. Conclusion The requirement of public interest for consent waivers in secondary biomedical research should be guided by well-defined criteria for systematic evaluation. Such a criteria and its application need to be periodically subject to intra-committee and intra-institution review, reflection, deliberation and amendment. (shrink)

Race and Gender in the Classroom explores the paradoxes of education, race, and gender, as Laurie Cooper Stoll follows eighteen teachers carrying out their roles as educators in an era of “post-racial” and “post-gendered” politics.

Race and Gender in the Classroom explores the paradoxes of education, race, and gender, as Laurie Cooper Stoll follows eighteen teachers carrying out their roles as educators in an era of “post-racial” and “post-gendered” politics.

We introduce a new framework for classifying logics on finite structures and studying their expressive power. This framework is based on the concept of almost everywhere equivalence of logics, that is to say, two logics having the same expressive power on a class of asymptotic measure 1. More precisely, if L, L ′ are two logics and μ is an asymptotic measure on finite structures, then $\scr{L}\equiv _{\text{a.e.}}\scr{L}^{\prime}(\mu)$ means that there is a class C of finite structures with μ (C)=1 (...) and such that L and L ′ define the same queries on C. We carry out a systematic investigation of $\equiv _{\text{a.e.}}$ with respect to the uniform measure and analyze the $\equiv _{\text{a.e.}}$ -equivalence classes of several logics that have been studied extensively in finite model theory. Moreover, we explore connections with descriptive complexity theory and examine the status of certain classical results of model theory in the context of this new framework. (shrink)

We carry out a systematic investigation of the definability of linear order on classes of finite rigid structures. We obtain upper and lower bounds for the expressibility of linear order in various logics that have been studied extensively in finite model theory, such as least fixpoint logic LFP, partial fixpoint logic PFP, infinitary logic Lω∞ω with a finite number of variables, as well as the closures of these logics under implicit definitions. Moreover, we show that the upper and lower bounds (...) established here cannot be made substantially tighter, unless outstanding conjectures in complexity theory are resolved at the same time. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...) Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

How should we incorporate algorithms into humanistic scholarship? The typical approach is to clone what humans have done but faster, extrapolating expert insights to landfills of source material. But creative scholars do not clone tradition; instead, they produce readings that challenge closely held understandings. We theorize and then illustrate how to construct bad robots trained to surprise and provoke. These robots aren’t the most human but rather the most alien—not tame but dangerous. We explore the relationship between the reproduction of (...) tradition and the generation of surprise and then show how formalizing a particular humanistic theory as a Bayesian prior allows us to identify readings that disrupt it through a process of algorithmic abduction. Among the exploding universe of surprising (and mostly ridiculous) possible readings, algorithmic efficiency allows us to select readings that nonetheless garner substantial support from the total archive and so merit interpretation and engagement. It is in such interaction between alien and human readers that meaning is made and understanding disturbed; it is by extending alien readings to novel texts that the scholarly community tests the value of those readings. (shrink)

In an adaptive clinical trial , key trial characteristics may be altered during the course of the trial according to predefined rules in response to information that accumulates within the trial itself. In addition to having distinguishing scientific features, adaptive trials also may involve ethical considerations that differ from more traditional randomized trials. Better understanding of clinical trial experts’ views about the ethical aspects of adaptive designs could assist those planning ACTs. Our aim was to elucidate the opinions of clinical (...) trial experts regarding their beliefs about ethical aspects of ACTs. (shrink)

Recent research indicates that compensation structure can be used by firms to discourage their employees from whistleblowing. We extend the ethics literature by examining how compensation structures and financial rewards work together to influence managers’ decisions to blow the whistle. Results from an experiment indicate that compensation with restricted stock, relative to stock payments that lack restrictions, can enhance the likelihood that managers will blow the whistle when large rewards are available. However, restricted stock can also threaten the effectiveness of (...) whistleblowing systems without the presence of large financial rewards for whistleblowing. Thus, the large potential rewards for whistleblowing enacted by the Dodd–Frank Act appear timely as firms are moving toward compensation agreements that include greater proportions of restricted stock. (shrink)

L’article se concentre sur la pandémie de covid-19 dans une tentative d’évaluer la contribution éventuelle de l’analyse philosophique à la compréhension et à la résolution des problèmes éthiques, juridiques et sociopolitiques qu’elle soulève. On aborde une série de dilemmes cruciaux qui requièrent des décisions pratiques, avant et après la production et la disponibilité des vaccins, à la lumière des théories éthiques et politiques contemporaines. Il s’avère que dans la plupart des cas les conceptions déontologiques semblent l’emporter sur les considérations conséquentialistes, (...) qui ne s’imposent à notre raisonnement que dans des situations d’urgence immédiate. La pandémie nous permet également d’apprécier le rôle important des vertus éthiques et épistémiques dans la prise des décisions critiques. (shrink)

Inhalts: Vorwort. A. SCHRIFTEN FICHTES. I. Gesammelte Werke. II. Einzelausgaben. III. Fremdsprachige Ausgaben. B. LITERATUR ZU FICHTE. I. Publikationen zu Leben und Werk im allgemeinen. II. Untersuchungen zu einzelnen Sachgebieten. III. Fichte und andere Denker. C. REGISTER. ZEITSCHRIFTENVERZEICHNIS. NACHTRAG.

Scientific endeavor is the pursuit of knowledge with the aim of advancing the welfare of all human beings. This endeavor is built on the ideology of science; thus, society relies on the integrity of the practice of science and of scientists themselves. The responsible conduct of research is the essence of good science; however, many of the pedagogical approaches used to instill integrity in science accentuate the negative rather than exemplify ideal professionalism. This paper makes an argument for the inculcation (...) of the appropriate conduct of research via a positive approach. We address the acclimation to the culture of science that supersedes diverse cultural backgrounds of students. We suggest techniques for the implementation of positive strategies and reinforce the benefit of approaching the teaching of ethical behavior as a competitive advantage. We highlight ways in which this approach can empower the individual scientist and the scientific community as a whole. Transmission of the culture of scientific professionalism formalizes the aims of an ideal scientific professional and encourages assimilation and identification as a member of the scientific profession. We purport that instilling scientific professionalism will spur responsible conduct of research. (shrink)

BackgroundHIV cure research involving cell and gene therapy has intensified in recent years. There is a growing need to identify ethical standards and safeguards to ensure cell and gene therapy (CGT) HIV cure research remains valued and acceptable to as many stakeholders as possible as it advances on a global scale.MethodsTo elicit preliminary ethical and practical considerations to guide CGT HIV cure research, we implemented a qualitative, in-depth interview study with three key stakeholder groups in the United States: (1) biomedical (...) HIV cure researchers, (2) bioethicists, and (3) community stakeholders. Interviews permitted evaluation of informants’ perspectives on how CGT HIV cure research should ethically occur, and were transcribed verbatim. We applied conventional content analysis focused on inductive reasoning to analyze the rich qualitative data and derive key ethical and practical considerations related to CGT towards an HIV cure.ResultsWe interviewed 13 biomedical researchers, 5 community members, and 1 bioethicist. Informants generated considerations related to: perceived benefits of CGT towards an HIV cure, perceived risks, considerations necessary to ensure an acceptable benefit/risk balance, CGT strategies considered unacceptable, additional ethical considerations, and considerations for first-in-human CGT HIV cure trials. Informants also proposed important safeguards to developing CGT approaches towards an HIV cure, such as the importance of mitigating off-target effects, mitigating risks associated with long-term duration of CGT interventions, and mitigating risks of immune overreactions.ConclusionOur study identified preliminary considerations for CGT-based HIV cure across three key stakeholder groups. Respondents identified an ideal cure strategy as one which would durably control HIV infection, protect the individual from re-acquisition, and eliminate transmission to others. Known and unknown risks should be anticipated and perceived as learning opportunities to preserve and honor the altruism of participants. Preclinical studies should support these considerations and be transparently reviewed by regulatory experts and peers prior to first-in-human studies. To protect the public trust in CGT HIV cure research, ethical and practical considerations should be periodically revisited and updated as the science continues to evolve. Additional ethics studies are required to expand stakeholder participation to include traditionally marginalized groups and clinical care providers. (shrink)