Denise M. Dudzinski

The Disclosure Dilemma — Large-Scale Adverse Events

Some adverse events such as a failure to disinfect medical equipment have the potential to harm many patients. The authors argue that medical institutions should develop policies for addressing large-scale adverse events and should routinely disclose these events to patients, even when the risk of harm is very low.

Zinc finger nucleases: looking toward translation

Genetic engineering has emerged as a powerful mechanism for understanding biological systems and a potential approach for redressing congenital disease. Alongside, the emergence of these technologies in recent decades has risen the complementary analysis of the ethical implications of genetic engineering techniques and applications. Although viral-mediated approaches have dominated initial efforts in gene transfer (GT) methods, an emerging technology involving engineered restriction enzymes known as zinc finger nucleases (ZFNs) has become a powerful new methodology for gene editing. Given the advantages provided by ZFNs for more specific and diverse approaches in gene editing for basic science and clinical applications, we discuss how ZFN research can address some of the ethical and scientific questions that have been posed for other GT techniques. This is of particular importance, given the momentum currently behind ZFNs in moving into phase I clinical trials. This study provides a historical account of the origins of ZFN technology, an analysis of current techniques and applications, and an examination of the ethical issues applicable to translational ZFN genetic engineering in early phase clinical trials.

The Culture of Dysthanasia: Attempting CPR in Terminally Ill Children

Both dying children and their families are treated with disrespect when the presumption of consent to cardiopulmonary resuscitation (CPR) applies to all hospitalized children, regardless of prognosis and the likely efficacy of CPR. This “opt-out” approach to CPR fails to appreciate the nuances of the special parent–child relationship and the moral and emotional complexity of enlisting parents in decisions to withhold CPR from their children. The therapeutic goal of CPR is not merely to resume spontaneous circulation, but rather it is to provide circulation to vital organs to allow for treatment of the underlying proximal and distal etiologies of cardiopulmonary arrest. When the treating providers agree that attempting CPR is highly unlikely to achieve the therapeutic goal or will merely prolong dying, we should not burden parents with the decision to forgo CPR. Rather, physicians should carry the primary professional and moral responsibility for the decision and use a model of informed assent from parents, allowing for respectful disagreement. As emphasized in the palliative care literature, we recommend a directive and collaborative goal-oriented approach to conversations about limiting resuscitation, in which physicians provide explicit recommendations that are in alignment with the goals and hopes of the family and emphasize the therapeutic indications for CPR. Through this approach, we hope to help parents understand that “doing everything” for their dying child means providing medical therapies that ameliorate suffering and foster the intimacy of the parent–child relationship in the final days of a child’s life, making the dying process more humane.

The diving bell meets the butterfly: identity lost and re-membered.

Jean Dominique Bauby, former editor of Elle, suffereda stroke to his brain stem that left him with locked-in syndrome. Subsequently, through blinking his left eye, he writes his memoirof this experience, The Diving Bell and the Butterfly. Thispaper explores the meaning of embodiment, especially as onesbody bears upon ones personal identity. It explores the variouschallenges and threats to selfhood that result from Baubysexperience and recounts how Bauby rises to the challenge throughhis memory and imagination.

Navigating moral distress using the moral distress map

The plethora of literature on moral distress has substantiated and refined the concept, provided data about clinicians’ (especially nurses’) experiences, and offered advice for coping. Fewer scholars have explored what makes moral distress moral. If we acknowledge that patient care can be distressing in the best of ethical circumstances, then differentiating distress and moral distress may refine the array of actions that are likely to ameliorate it. This article builds upon scholarship exploring the normative and conceptual dimensions of moral distress and introduces a new tool to map moral distress from emotional source to corrective actions. The Moral Distress Map has proven useful in clinical teaching and ethics-related debriefings.

Competent Patients’ Refusal of Nursing Care

Competent patients’ refusals of nursing care do not yet have the legal or ethical standing of refusals of life-sustaining medical therapies such as mechanical ventilation or blood products. The case of a woman who refused turning and incontinence management owing to pain prompted us to examine these situations. We noted several special features: lack of paradigm cases, social taboo around unmanaged incontinence, the distinction between ordinary versus extraordinary care, and the moral distress experienced by nurses. We examined this case on the merits and limitations of five well-known ethical positions: pure autonomy, conscientious objection, paternalism, communitarianism, and feminism. We found each lacking and argue for a ‘negotiated reliance’ response where nurses and others tread as lightly as possible on the patient’s autonomy while negotiating a compromise, but are obligated to match the patient’s sacrifice by extending themselves beyond their usual professional practice.

Complex Ethics Consultations: Cases That Haunt Us

We may not be able to make you love reading, but complex ethics consultations will lead you to love reading starting from now. Book is the window to open the new world. The world that you want is in the better stage and level. World will always guide you to even the prestige stage of the life. You know, this is some of how reading will give you the kindness. In this case, more books you read more knowledge you know, but it can mean also the bore is full.

Incorporating principles and practical wisdom in research ethics education: a preliminary study

Purpose Researchers are faced with daily ethical decisions that are subtle and nuanced. However, research ethics training has primarily focused on formal guidelines, general ethical principles, and historically noteworthy cases of research abuse, which may not prepare researchers to respond to everyday dilemmas in research. This study characterized researchers’ responses to ethical dilemmas with the goal of aligning research ethics education programs with the demands of practice. Method As a preliminary study, the authors conducted 23 semistructured interviews with senior researchers and research administrators engaged in research with human subjects at the University of Washington and affiliated institutions in 2004. Transcripts were reviewed for research conflicts and strategies used to resolve conflicts identified by participants. Results Participants referenced two distinct methods of reasoning when faced with conflicts: formal guidelines and practical wisdom. Formal guidelines include established goals, boundaries, and absolutes. Practical wisdom, an Aristotelian concept involving intuitions developed through experience, facilitates responses to everyday dilemmas and new situations. Developing practical wisdom requires researchers to calibrate their own intuitions about right and wrong. Three practices were reported to contribute to this development: self-reflection, sincere skepticism, and open dialogue with colleagues. Conclusions These reflections from the senior researchers suggest a need to expand the scope of ethics education programs to include a focus on the development of researchers’ pragmatic decision making in addition to the formal rules that govern research. Further research should explore effective educational and institutional strategies that can foster researchers’ development in ethical decision making and conduct.

Compounding vulnerability: pregnancy and schizophrenia.

The predominant ethical framework for addressing reproductive decisions in the maternal–fetal relationship is respect for the womans autonomy. However, when a pregnant schizophrenic woman lacks such autonomy, healthcare providers try to both protect her and respect her preferences. By delineating etic (objective) and emic (subjective) perspectives on vulnerability, I argue that options which balance both perspectives are preferable and that acting on etic perspectives to the exclusion of emic considerations is rarely justified. In negotiating perspectives, we balance the etic commitment to protect the vulnerable patient and her fetus from harm with the emic concern to empower a decisionally incapacitated woman. Equilibrium is best achieved by nurturing interdependent relationships that empower and protect the vulnerable woman. The analysis points to the need for better social support for mentally ill patients.

Pedagogical goals for academic bioethics programs.

Scientists, healthcare providers, and members of institutional review and ethics boards find themselves confronting bioethical issues without sufficient expertise to address them. In response, academic bioethics programs have proliferated and specialized to meet the needs of these diverse professionals and scholars. Inspired by and written for the Second Cambridge Consortium for Bioethics Education in April 2012, in this article we articulate general pedagogical goals for various academic bioethics programs. These goals have been influenced by debates in the bioethics literature, scholarly presentations and publications, and insights gained from designing curricula at our institutions. This publication is intended as a preliminary proposal—a point of reference for veteran and burgeoning academic bioethics programs. Because the authors are most familiar with U.S. bioethics programs, we have focused on what we know. We expect that this article will spark a discussion about similarities and differences among U.S. and international programs. We ask readers to consider how our suggestions can be improved upon and refined. In the United States bioethics education in the health sciences tends to be linked to various competencies— behaviors and skills that can be demonstrated and measured. This emphasis on measurement may seem to diminish the importance of education designed to enrich moral sensibilities. We believe all bioethics programs must attend to character development, knowledge, and skills; however, we recognize that programs may place emphasis on one or another of these components. Bioethics is taught both in educational programs and in an ad hoc fashion. For example, observation of mentors and colleagues undoubtedly shapes moral behavior; however, the focus of this article is on academic programs in which bioethics education occurs by design. Although the settings may include classrooms, clinical and research arenas, and professional contexts, academic bioethics programs always involve curricula and pedagogical objectives. Additionally, although some academic programs focus on physician education, the objectives and pedagogical approaches are often easily adapted to training for other healthcare professionals. Our intention is to be inclusive rather than exclusive. This article was inspired and informed by the Second Cambridge Consortium for Bioethics Education. We are grateful to Thomasine Kushner, Ph.D., Editor of Cambridge Quarterly of Healthcare Ethics, and Mark Zadrozny, Publisher at Cambridge University Press, as well as the participants in the Second Cambridge Consortium for Bioethics Education for their support, suggestions, and engagement with this project.