BACKGROUND: The value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes.
METHODS: We conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles.
RESULTS: Themes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.
CONCLUSIONS: Our thematic analysis was guided by the moral experience framework conceived by Hunt and Carnevale (2011) in association with the VOICE (Views On Interdisciplinary Childhood Ethics) collaborative research group.
CONCLUSIONS: This article will be of interest and value to healthcare professionals and bioethicists who support families navigating the medically and ethically complex landscape of T13/18.

Ethicists, policy-makers, and the general public have questioned whether artificial entities such as robots warrant rights or other forms of moral consideration. There is little synthesis of the research on this topic so far. We identify 294 relevant research or discussion items in our literature review of this topic. There is widespread agreement among scholars that some artificial entities could warrant moral consideration in the future, if not also the present. The reasoning varies, such as concern for the effects on artificial entities and concern for the effects on human society. Beyond the conventional consequentialist, deontological, and virtue ethicist ethical frameworks, some scholars encourage \"information ethics\" and \"social-relational\" approaches, though there are opportunities for more in-depth ethical research on the nuances of moral consideration of artificial entities. There is limited relevant empirical data collection, primarily in a few psychological studies on current moral and social attitudes of humans towards robots and other artificial entities. This suggests an important gap for psychological, sociological, economic, and organizational research on how artificial entities will be integrated into society and the factors that will determine how the interests of artificial entities are considered.

Biospecimen research is a prominent investigative strategy that aims to provide novel insights into coronavirus disease 2019 (COVID-19), inform clinical trials, and develop effective, life-saving treatments. However, COVID-19 biospecimen research raises accompanying ethical concerns and practical challenges for investigators and participants. In this special article, we discuss the ethical issues that are associated with autonomy, beneficence, and justice in COVID-19 biospecimen research and describe strategies to manage the practical challenges, with an emphasis on protecting the rights and welfare of human research participants during a pandemic response. Appropriate institutional review board oversight and bioethics guidance for COVID-19 biospecimen research must maintain their focus on protecting the rights and welfare of research participants, despite the urgent need for more knowledge about the virus and the threat it poses to communities and nations.

Geoengineering as a technological intervention to avert the dangerous climate change has been on the table at least since 2006. The global outreach of the technology exercised in a non-encapsulated system, the concerns with unprecedented levels and scales of impact and the overarching interdisciplinarity of the project make the geoengineering debate ethically quite relevant and complex. This paper explores the ethical desirability of geoengineering from an overall review of the existing literature on the ethics of geoengineering. It identifies the relevant literature on the ethics of geoengineering by employing a standard methodology. Based on various framing of the major ethical arguments and their subsets, the results section presents the opportunities and challenges at stake in geoengineering from an ethical point of view. The discussion section takes a keen interest in identifying the evolving dynamics of the debate, the grey areas of the debate, with underdeveloped arguments being brought to the foreground and in highlighting the arguments that are likely to emerge in the future as key contenders. It observes the semantic diversity and ethical ambiguity, the academic lop-sidedness of the debate, missing contextual setting, need for interdisciplinary approaches, public engagement, and region-specific assessment of ethical issues. Recommendations are made to provide a useful platform for the second generation of geoengineering ethicists to help advance the debate to more decisive domains with the required clarity and caution.

BACKGROUND: Clinical ethics support services have been advocated in recent decades. In clinical practice, clinical ethics support services are often requested for difficult decisions near the end of life. However, their contribution to improving healthcare has been questioned and demands for evaluation have been put forward. Research indicates that there are considerable challenges associated with defining adequate outcomes for clinical ethics support services. In this systematic review, we report findings of qualitative studies and surveys, which have been conducted to evaluate clinical ethics support services near the end of life.
METHODS: Electronic databases and other sources were queried from 1970 to May 2018. Two authors screened studies independently. Methodological quality of studies was assessed. For each arm of the review, an individual synthesis was performed. Prospero ID: CRD42016036241.
METHODS: Ethical approval is not needed as it is a systematic review of published literature.
RESULTS: In all, 2088 hits on surveys and 2786 on qualitative studies were found. After screening, nine surveys and four qualitative studies were included. Survey studies report overall positive findings using a very wide and heterogeneous range of outcomes. Negative results were reported only occasionally. However, methodological quality and conceptual justification of used outcomes was often weak and limits generalizability of results.
CONCLUSIONS: Evidence points to positive outcomes of clinical ethics support services. However, methodological quality needs to be improved. Further qualitative or mixed-method research on evaluating clinical ethics support services may contribute to the development of evaluating outcomes of clinical ethics support services by means of broaden the range of appropriate (process-oriented) outcomes of (different types of) clinical ethics support services.

We describe the results and implications of a literature review that identifies the number of normative and empirical articles, respectively, that have appeared in Nursing Ethics in each year from 1994 to 2017. The results of our analysis suggest a powerful trend away from normative scholarship and toward empirical investigation within the field of nursing ethics, both overall and comparatively. We argue that there are several important negative consequences of this trend, and we propose some potential solutions to address them.

BACKGROUND: Institutional review boards must guarantee the ethical acceptability of a randomized controlled trial before it is conducted. However, some may regard an unbalanced randomization ratio as reflecting an absence of uncertainty between the groups being compared. The objective was to assess institutional review board members\' perceptions of whether unbalanced randomization in randomized controlled trials is justified and ethically acceptable.
METHODS: Institutional review board members worldwide completed a survey involving clinical vignettes modeling situations classically advocated to explain the use of unbalanced randomization. Institutional review board members were asked whether unbalanced randomization was justified and ethically sound. Answers were collected by using visual analog scales. Data were analyzed by principal component analysis, and a hierarchical ascending classification was created. Verbatim answers were assessed by qualitative content analysis.
RESULTS: We analyzed responses from 148 institutional review board members. Three classes of respondents were identified: class 1 (n = 58; 39.2%), mostly skeptics who disagreed with unbalanced randomization, whatever the justification; class 2 (n = 46; 31.1%), believers who considered that unbalanced randomization was acceptable whatever the justification, except cost; and class 3 (n = 44; 29.7%), circumstantial believers for whom unbalanced randomization may be justified for methodological and safety issues but not cost or ethical issues. When institutional review board members were asked whether unbalanced randomization respected the equipoise principle, the mean quotation was low (4.5 ± 3.3 out of 10), especially for class 1 members.
CONCLUSIONS: Institutional review board members perceive unbalanced randomization heterogeneously in terms of its justification and its ethical validity.

The idea of patient advocacy as a function of clinical ethics consultation (CEC) has been debated in the bioethics literature. In particular, opinion is divided as to whether patient advocacy inherently is in conflict with the other duties of the ethics consultant, especially that of impartial mediator. The debate is complicated, however, because patient advocacy is not uniformly conceptualized. This article examines two literatures that are crucial to understanding patient advocacy in the context of bioethical deliberations: the CEC literature and the literature on advocacy in the social work profession. A review of this literature identifies four distinct approaches to patient advocacy that are relevant to CEC: (1) the best interest approach, (2) the patient rights approach, (3) the representational approach, and (4) the empowerment approach. After providing a clearer understanding of the varied meanings of patient advocacy in the context of CEC, we assert that patient advocacy is not inherently inconsistent with the function of the ethics consultant and the CEC process. Finally, we provide a framework to help consultants determine if they should adopt an advocacy role.

BACKGROUND: Increasing collaboration between industrialised and developing countries in human research studies has led to concerns regarding the potential exploitation of resource deprived countries. This study, commissioned by the former National Bioethics Advisory Commission of the United States, surveyed developing country researchers about their concerns and opinions regarding ethical review processes and the performance of developing country and US international review boards (IRBs).
METHODS: Contact lists from four international organisations were used to identify and survey 670 health researchers in developing countries. A questionnaire with 169 questions explored issues of IRB review, informed consent, and recommendations.
RESULTS: The majority of the developing country researchers were middle aged males who were physicians and were employed by educational institutions, carrying out research on part time basis. Forty four percent of the respondents reported that their studies were not reviewed by a developing country IRB or Ministry of Health and one third of these studies were funded by the US. During the review process issues such as the need for local language consent forms and letters for approval, and confidentiality protection of participants were raised by US IRBs in significantly higher proportions than by host country IRBs.
CONCLUSIONS: This survey indicates the need for the ethical review of collaborative research in both US and host countries. It also reflects a desire for focused capacity development in supporting ethical review of research.

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