Comparative Approaches to Genetic Discrimination: Chasing Shadows?

Genetic discrimination (GD) is one of the most pervasive issues associated with genetic research and its large-scale implementation. An increasing number of countries have adopted public policies to address this issue. Our research presents a worldwide comparative review and typology of these approaches. We conclude with suggestions for public policy development.

The Advent of the Professional Ethicist: Moral Expertise and Health-Care Ethics Certification.

With the Healthcare Ethics Consultant Certification (HEC-C) offered through the American Society for Bioethics and Humanities (ASBH), the practice of clinical ethics has taken a decisive step into professionalization. But without an unambiguous sense of what clinical ethicists can contribute to the clinical environment, it is unclear what the HEC-C ensures clinical ethicists can do. Though the ASBH enumerates a set of core competencies, many disagree over what role those competencies empower ethicists to serve. Two recent publications are notable for advocating conflicting positions on the question of ethicists' competence: "Ethics Expertise: What It Is, How to Get It, and What to Do with It" by Christopher Meyers (2018) and Rethinking Health Care Ethics by Stephen Scher and Kasia Kozlowska (2018). In response to Scher and Kozlowska's argument that the primary role of ethicists is to create space to engage clinician's moral intuitions, this analysis follows Meyers in contending that ethicists can also contribute a kind of moral expertise. However, acquiring moral expertise is no easy task, and it is unlikely to be substantiated by a certification exam. This analysis draws on research from the psychology of expertise to outline the sort of training needed to cultivate and enhance moral expertise.

Bioethics as a Vocation.

This essay offers practical guidance for the activity of bioethics scholarship in the form of maxims or rules of thumb, explicated by the author's work in bioethics research, mentoring, peer review, and journal editing. It is organized into three sections: (1) education, (2) seeking ideas for projects, and (3) writing papers.

The Belmont Report and Innovative Practice.

One of the Belmont Report's most important contributions was the clear and serviceable distinction it drew between standard medical practice and biomedical research. A less well-known achievement of the Report was its conceptualization of innovative practice, a type of medical practice that is often mistaken for research because it is new, untested, or experimental. Although the discussion of innovative practice in Belmont is brief and somewhat cryptic, this does not reflect the significant progress its authors made in understanding innovative practice and the distinctive ethical issues it raises. This article explores the history and broader context of Belmont's conception of innovative practice, its strengths and weaknesses, and its contemporary relevance for scholars working in bioethics and health policy. While this conception of innovative practice deserves our attention, it is inherently limited in some important ways.

What the HEC-C? An Analysis of the Healthcare Ethics Consultant-Certified Program: One Year in.

Efforts to professionalize the field of bioethics have led to the development of the Healthcare Ethics Consultant-Certified (HEC-C) Program intended to credential practicing healthcare ethics consultants (HCECs). Our team of professional ethicists participated in the inaugural process to support the professionalization efforts and inform our views on the value of this credential from the perspective of ethics consultants. In this paper, we explore the history that has led to this certification process, and evaluate the ability of the HEC-C Program to meet the goals it has set forth for HCECs. We describe the benefits and weaknesses of the program and offer constructive feedback on how the process might be strengthened, as well as share our team's experience in preparing for the exam.

What is 'moral distress' in nursing? A feminist empirical bioethics study.

BACKGROUND: The phenomenon of 'moral distress' has continued to be a popular topic for nursing research. However, much of the scholarship has lacked conceptual clarity, and there is debate about what it means to experience moral distress. Moral distress remains an obscure concept to many clinical nurses, especially those outside of North America, and there is a lack of empirical research regarding its impact on nurses in the United Kingdom and its relevance to clinical practice. RESEARCH AIM: To explore the concept of moral distress in nursing both empirically and conceptually. METHODOLOGY: Feminist interpretive phenomenology was used to explore and analyse the experiences of critical care nurses at two acute care trauma hospitals in the United Kingdom. Empirical data were analysed using Van Manen's six steps for data analysis. ETHICAL CONSIDERATIONS: The study was approved locally by the university ethics review committee and nationally by the Health Research Authority in the United Kingdom. FINDINGS: The empirical findings suggest that psychological distress can occur in response to a variety of moral events. The moral events identified as causing psychological distress in the participants' narratives were moral tension, moral uncertainty, moral constraint, moral conflict and moral dilemmas. DISCUSSION: We suggest a new definition of moral distress which captures this broader range of moral events as legitimate causes of distress. We also suggest that moral distress can be sub-categroised according to the source of distress, for example, 'moral-uncertainty distress'. We argue that this could aid in the development of interventions which attempt to address and mitigate moral distress. CONCLUSION: The empirical findings support the notion that narrow conceptions of moral distress fail to capture the real-life experiences of this group of critical care nurses. If these experiences resonate with other nurses and healthcare professionals, then it is likely that the definition needs to be broadened to recognise these experiences as 'moral distress'.

Rural Bioethics: The Alaska Context.

With by far the lowest population density in the United States, myriad challenges attach to healthcare delivery in Alaska. In the "Size, Population, and (In)Accessibility" section, we characterize this geographic context, including how it is exacerbated by lack of infrastructure. In the "Distributing Healthcare" section, we turn to healthcare economics and staffing, showing how these bear on delivery-and are exacerbated by geography. In the "Health Care in Rural Alaska" section, we turn to rural care, exploring in more depth what healthcare delivery looks like outside of Alaska's major cities. This discussion continues in the "Alaska's Native Villages" section, which specifically analyzes healthcare in Alaska's indigenous villages, some of the smallest and most isolated communities in the United States. Though many of the ways we could improve Alaskan health care for Alaskan residents are limited by its unique features, the "Justice and Healthcare Delivery" and "Technology and Telemedicine" sections consider ways in which certain policies and technology-including telemedicine-could mitigate the challenges developed in previous sections.

Beyond the hype of big data and artificial intelligence: building foundations for knowledge and wisdom.

Big data, coupled with the use of advanced analytical approaches, such as artificial intelligence (AI), have the potential to improve medical outcomes and population health. Data that are routinely generated from, for example, electronic medical records and smart devices have become progressively easier and cheaper to collect, process, and analyze. In recent decades, this has prompted a substantial increase in biomedical research efforts outside traditional clinical trial settings. Despite the apparent enthusiasm of researchers, funders, and the media, evidence is scarce for successful implementation of products, algorithms, and services arising that make a real difference to clinical care. This article collection provides concrete examples of how "big data" can be used to advance healthcare and discusses some of the limitations and challenges encountered with this type of research. It primarily focuses on real-world data, such as electronic medical records and genomic medicine, considers new developments in AI and digital health, and discusses ethical considerations and issues related to data sharing. Overall, we remain positive that big data studies and associated new technologies will continue to guide novel, exciting research that will ultimately improve healthcare and medicine-but we are also realistic that concerns remain about privacy, equity, security, and benefit to all.

Medical staff opposition to a deep and continuous palliative sedation request under Claeys-Leonetti law.

BACKGROUND: For the year 2018, the French government plans a revision of bioethics laws, including certainly the recent Claeys-Leonetti law introducing the right to deep and continuous sedation at the request of palliative patients and prohibiting euthanasia for end-of-life patients. Because there is no published data on medical staff opposition to a deep and continuous palliative sedation request under Claeys-Leonetti law, we believe this report may give insight into physicians' decision making, into the role of criteria for prudent practice, and thus contribute to the bioethical debate. CASE PRESENTATION: We report a 70-year-old patient with squamous cell carcinoma of the hypopharyngeal region, who categorically refused any treatment since one year and asked for deep and continuous palliative sedation until death after attempting suicide. The patient's request was examined and denied by palliative multidisciplinary board, in accordance with by the French Oncology Coordination Centre guidelines. This situation did not fulfil the criteria requested by Claeys-Leonetti law. CONCLUSIONS: As highlighted by the present case-report, patient's expectation regarding palliative sedation can be ambivalent with properly so called euthanasia or assisted suicide. This ambivalent perception was part of the controversy surrounding the parliamentary debate, which is still relevant. This case report supports that deep and continuous sedation under Claeys-Leonetti law need to meet specific criteria defined by the law and documented in the medical files as a safeguard against inappropriate practice. In fact, one of the shortcomings of the current arrangements of Claeys-Leonetti law is a lack of objective medical-based criteria. So it is necessary that scientific peer-reviews papers be published quickly in order to deepen the bioethical debate on the end of life.

The value of metaphorical reasoning in bioethics: An empirical-ethical study.

BACKGROUND:: Metaphors are often used within the context of ethics and healthcare but have hardly been explored in relation to moral reasoning. OBJECTIVE:: To describe a central set of metaphors in one case and to explore their contribution to moral reasoning. METHOD:: Semi-structured interviews were conducted with 16 parents of a child suffering from the neurodegenerative disease CLN3. The interviews were recorded, transcribed, and metaphors were analyzed. The researchers wrote memos and discussed about their analyses until they reached consensus. ETHICAL CONSIDERATIONS:: Participants gave oral and written consent and their confidentiality and anonymity were respected. FINDINGS:: A central set of metaphors referred to the semantic field of the hands and arms and consisted of two central metaphors that existed in a dialectical relationship: grasping versus letting go. Participants used these metaphors to describe their child's experiences, who had to "let go" of abilities, while "clinging" to structures and the relationship with their parent(s). They also used it to describe their own experiences: participants tried to "grab" the good moments with their child and had to "let go" of their child when (s)he approached death. Participants, in addition, "held" onto caring for their child while being confronted with the necessity to "let go" of this care, leaving it to professional caregivers. DISCUSSION:: The ethical analysis of the findings shows that thinking in terms of the dialectical relationship between "grasping" and "letting go" helps professional caregivers to critically think about images of good care for children with CLN3. It also helps them to bear witness to the vulnerable, dependent, and embodied nature of the moral self of children with CLN3 and their parents. CONCLUSION:: Metaphorical reasoning may support the inclusion of marginalized perspectives in moral reasoning. Future studies should further explore the contribution of metaphorical reasoning to moral reasoning in other cases.

What is 'moral distress'? A narrative synthesis of the literature.

AIMS: The aim of this narrative synthesis was to explore the necessary and sufficient conditions required to define moral distress. BACKGROUND: Moral distress is said to occur when one has made a moral judgement but is unable to act upon it. However, problems with this narrow conception have led to multiple redefinitions in the empirical and conceptual literature. As a consequence, much of the research exploring moral distress has lacked conceptual clarity, complicating attempts to study the phenomenon. DESIGN: Systematic literature review and narrative synthesis (November 2015-March 2016). DATA SOURCES: Ovid MEDLINE® In-Process & Other Non-Indexed Citations 1946-Present, PsycINFO® 1967-Present, CINAHL® Plus 1937-Present, EMBASE 1974-24 February 2016, British Nursing Index 1994-Present, Social Care Online, Social Policy and Practice Database (1890-Present), ERIC (EBSCO) 1966-Present and Education Abstracts. REVIEW METHODS: Literature relating to moral distress was systematically retrieved and subjected to relevance assessment. Narrative synthesis was the overarching framework that guided quality assessment, data analysis and synthesis. RESULTS: In all, 152 papers underwent initial data extraction and 34 were chosen for inclusion in the narrative synthesis based on both quality and relevance. Analysis revealed different proposed conditions for the occurrence of moral distress: moral judgement, psychological and physical effects, moral dilemmas, moral uncertainty, external and internal constraints and threats to moral integrity. CONCLUSION: We suggest the combination of (1) the experience of a moral event, (2) the experience of 'psychological distress' and (3) a direct causal relation between (1) and (2) together are necessary and sufficient conditions for moral distress.

INFORMED CONSENT IN CROATIAN CLINICAL LABORATORY PRACTICE - CURRENT ISSUES AND FUTURE PERSPECTIVES.

This paper deliberates on the place and role of informed consent in everyday clinical laboratory practice. Taking into account international ethical guidelines such as the UNESCO Universal Declaration on Bioethics and Human Rights, the Declaration of Helsinki of the World Medical Association, and Croatian national laws and codes such as the Act on the Protection of Patients' Rights, the Act on Medical Biochemistry, the Code of Ethics of Medical Biochemists and Medical Deontology, the Act on Healthcare Services, and the Code of Ethics of the Croatian Chamber of Healthcare Workers, an overview is given on the actual implementation of the aforementioned recommendations and regulations. A distinction between consent to a medical procedure and consent to enrolment in a research protocol is strongly stressed out. Special emphasis is placed on the role of specialists in laboratory medicine and masters of medical biochemistry in the process of obtaining informed consent. The design of an 'informed consent interview' is to be taken into consideration. Additional deliberation is needed on the option of 'broad consent'. It is concluded that informed consent should represent an important and routine activity within Croatian clinical laboratories.

Legitimacy in bioethics: challenging the orthodoxy.

Several prominent writers including Norman Daniels, James Sabin, Amy Gutmann, Dennis Thompson and Leonard Fleck advance a view of legitimacy according to which, roughly, policies are legitimate if and only if they result from democratic deliberation, which employs only public reasons that are publicised to stakeholders. Yet, the process described by this view contrasts with the actual processes involved in creating the Affordable Care Act (ACA) and in attempting to pass the Health Securities Act (HSA). Since the ACA seems to be legitimate, as the HSA would have been had it passed, there seem to be counterexamples to this view. In this essay, I clarify the concept of legitimacy as employed in bioethics discourse. I then use that clarification to develop these examples into a criticism of the orthodox view-that it implies that legitimacy requires counterintuitively large sacrifices of justice in cases where important advancement of healthcare rights depends on violations of publicity. Finally, I reply to three responses to this challenge: (1) that some revision to the orthodox view salvages its core commitments, (2) that its views of publicity and substantive considerations do not have the implications that I claim and (3) that arguments for it are strong enough to support even counterintuitive results. My arguments suggest a greater role for substantive considerations than the orthodox view allows.

An update on the "empirical turn" in bioethics: analysis of empirical research in nine bioethics journals.

BACKGROUND: A review of literature published a decade ago noted a significant increase in empirical papers across nine bioethics journals. This study provides an update on the presence of empirical papers in the same nine journals. It first evaluates whether the empirical trend is continuing as noted in the previous study, and second, how it is changing, that is, what are the characteristics of the empirical works published in these nine bioethics journals. METHOD: A review of the same nine journals (Bioethics; Journal of Medical Ethics; Journal of Clinical Ethics; Nursing Ethics; Cambridge Quarterly of Healthcare Ethics; Hastings Center Report; Theoretical Medicine and Bioethics; Christian Bioethics; and Kennedy Institute of Ethics Journal) was conducted for a 12-year period from 2004 to 2015. Data obtained was analysed descriptively and using a non-parametric Chi-square test. RESULTS: Of the total number of original papers (N = 5567) published in the nine bioethics journals, 18.1% (n = 1007) collected and analysed empirical data. Journal of Medical Ethics and Nursing Ethics led the empirical publications, accounting for 89.4% of all empirical papers. The former published significantly more quantitative papers than qualitative, whereas the latter published more qualitative papers. Our analysis reveals no significant difference (χ2 = 2.857; p = 0.091) between the proportion of empirical papers published in 2004-2009 and 2010-2015. However, the increasing empirical trend has continued in these journals with the proportion of empirical papers increasing from 14.9% in 2004 to 17.8% in 2015. CONCLUSIONS: This study presents the current state of affairs regarding empirical research published nine bioethics journals. In the quarter century of data that is available about the nine bioethics journals studied in two reviews, the proportion of empirical publications continues to increase, signifying a trend towards empirical research in bioethics. The growing volume is mainly attributable to two journals: Journal of Medical Ethics and Nursing Ethics. This descriptive study further maps the still developing field of empirical research in bioethics. Additional studies are needed to completely map the nature and extent of empirical research in bioethics to inform the ongoing debate about the value of empirical research for bioethics.

The Emergence and Development of Bioethics in the Uk.

Bioethics emerged in a specific social and historical context. Its relationship to older traditions in medical ethics and to environmental ethics is an ongoing matter of debate. This article analyses the social, institutional, and economic factors that led to the development of bioethics in the UK in the 1980s, and the course it has taken since. We show how phenomena such as globalisation, the focus on 'ethical legal and social issues' and the empirical turn have affected the methods employed, and argue that ongoing controversies about the nature and possibility of ethical expertise will affect its future.

Autonomy-Centered Healthcare.

In this paper, I aim to demonstrate that the consequences of the current United States health insurance scheme on both physician and patient autonomy is dire. So dire, in fact, that the only moral solution is something other than what we have now. The United States healthcare system faces much criticism at present. But my focus is particular: I am interested in the ways in which insurance interferes with physician and patient autonomy. (I do not consider The Affordable Care Act much of a change in this aspect of the system, for it still relies heavily on private insurance, albeit often subsidized.) I will argue in favor of an expansion of the traditional conception of what I call "medical autonomy" or "healthcare autonomy" and the usual role it plays in bioethical discussions. More generally, I show that in morally designing or evaluating any healthcare system, serious attention should be paid to how this system helps foster what I call active autonomy.

Reproductive function: the protection of the rights of the people which are sent to the area of the fighting.

OBJECTIVE: Introduction: The issues of problems of the legal regulation of posthumous reproduction in Ukraine and foreign countries are analysis in the article. The author substantiates the necessity in the creation and acceptance of the State Program of the retrieval of reproductive cells in people who are sending to the area of the fighting. The aim:the purpose of our work is a comprehensive study of post-mortem (post-mortem) reproduction and substantiation of the possibility and necessity of adopting a state program for the selection of reproductive cells of individuals who are sent to a combat zone to ensure their full social protection and assistance in the realization of the right to fatherhood or motherhood. PATIENTS AND METHODS: Materials and methods: the experience of certain countries is analyzed in the research. Additionally, we used statistical data of international organizations, conclusions of experts and foreign legal acts dealing with posthumous reproduction and auxiliary reproductive technologies, judicial practice, doctrinal ideas and views on this issue. RESULTS: Review: there are medical (practical) preconditions for the introduction of posthumous reproduction programs. Among them is the technology of obtaining reproductive cells (post-mortem too), their preservation and successful subsequent use. In addition, foreign experience shows the success of the application of these technologies and the real guarantee of full implementation of the range of rights to the family, fatherhood or maternity. CONCLUSION: Conclusions: we note the urgent need to develop and adopt a state reproductive cell selection program for individuals who are sent to the combat zones (according to a model that exists in such countries as the USA and Israel).

Highlights in bioethics through 40†years: a quantitative analysis of top-cited journal articles.

BACKGROUND: The field of bioethics is constantly evolving. To investigate trends in the field of bioethics, we conducted a quantitative analysis of the top-cited articles in bioethical journals over the past 40 years. METHODS: Retrospective quantitative study of the 20 most cited bioethics articles published each year from 1975 to 2014 were conducted. Article samples were selected from a list of the most relevant 100 journals in the field of bioethics. RESULTS: In total, 800 top-cited articles between 1975 and 2014 in the domain of bioethics were retrieved and analysed. More than half of them were composed by single authors, but multiauthorship became more prevalent with time. The majority (84.5%) of these highly cited articles originated from the USA (65.3%), UK or Canada, though the proportion of other countries increased in recent years. Almost half (44.6%) of the highly cited articles belonged to the subfield of clinical ethics, but other subfields such as research ethics, public health ethics and neuroethics became more prominent. Overall, the distribution of Thesaurus keywords and subfields became more diverse over time, and the number of journals publishing top-cited articles doubled. Furthermore, the empirical ethics approach increased over time in our sample of top-cited articles. CONCLUSIONS: In sum, the forefront of bioethics is getting more diversified, collaborative and international. The presumed 'mainstream' becomes less dominant over time, as more highly cited articles come from new subfields, discuss new topics, use more Bioethics Thesaurus keywords, more authors participate and more countries other than the USA contribute to bioethics journals.