Another "turn" in bioethics? A plea for methodological continuity.

A growing trend in bioethics highlights the importance of using big data science methods to advance normative insight. This has been called the "digital turn" in bioethics by Salloch and Ursin. Automated data processing can, for example, detect significant patterns of correlation that have escaped the attention of human scholars. Although we agree that such technological innovations could bolster existing methods in empirical bioethics (EB), we argue that it should not be conceptualized as a new turn but rather as a revivification, and possibly an amplification of entrenched debates in EB. We begin by highlighting some convergences between EB and digital bioethics that Salloch and Ursin seem to categorize as fundamental differences and end up with elaborating on some risks related to the integration of empirical findings with normative (philosophical) analysis in the digitalization trend.

A Rubik's Cube-Inspired Pedagogical Tool for Teaching and Learning Engineering Ethics.

To facilitate engineering students' understanding of engineering ethics and support instructors in developing course content, this study introduces an innovative educational tool drawing inspiration from the Rubik's Cube metaphor. This Engineering Ethics Knowledge Rubik's Cube (EEKRC) integrates six key aspects-ethical theories, codes of ethics, ethical issues, engineering disciplines, stakeholders, and life cycle-identified through an analysis of engineering ethics textbooks and courses across the United States, Singapore, and China. This analysis underpins the selection of the six aspects, reflecting the shared and unique elements of engineering ethics education in these regions. In an engineering ethics course, the EEKRC serves multiple functions: it provides visual support for grasping engineering ethics concepts, acts as a pedagogical guide for both experienced and inexperienced educators in course design, offers a complementary assessment method for evaluating students learning outcomes, and assists as a reference for students engaging in ethical analysis.

Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.

BACKGROUND: Data from electronic health records (EHRs) are increasingly used in the field of genetic research to further precision medicine initiatives. However, many of these efforts exclude individuals with intellectual disabilities, which often stem from genetic conditions. To include this important subpopulation in EHR research, important ethical, legal, and social issues should be considered. OBJECTIVE: The goal of this study was to review prior research to better understand what ethical, legal, and social issues may need further investigation when considering the research use of EHRs for individuals with genetic conditions that may result in intellectual disability. This information will be valuable in developing methods and best practices for involving this group in research given they are considered a vulnerable population that may need special research protections. METHODS: We conducted a scoping review to examine issues related to the use of EHRs for research purposes and those more broadly associated with genetic research. The initial search yielded a total of 460 unique citations. We used an evaluative coding process to determine relevancy for inclusion. RESULTS: This approach resulted in 59 articles in the following areas: informed consent, privacy and security, return of results, and vulnerable populations. The review included several models of garnering informed consent in EHR or genetic research, including tiered or categorical, blanket or general, open, and opt-out models. Second, studies reported on patients' concerns regarding the privacy and security of EHR or genetic data, such as who has access, type of data use in research, identifiability, and risks associated with privacy breach. The literature on return of research results using biospecimens examined the dissension in the field, particularly when sharing individualized genetic results. Finally, work involving vulnerable populations highlighted special considerations when conducting EHR or genetic research. CONCLUSIONS: The results frame important questions for researchers to consider when designing EHR studies, which include individuals with intellectual disabilities, including appropriate safeguards and protections.

Evaluation of Ethical Analyses in Seven Reports from the European Network for Health Technology Assessment.

OBJECTIVES: Ethics has been considered among the core domains of health technology assessment (HTA), but there are still disputes regarding ethical analysis. This study aimed to examine full final reports of the European Network for Health Technology Assessment (EUnetHTA) in terms of their compliance with the ethical methodology and ethical perspective of the HTA Core Model®. METHODS: The study examines seven full final HTA reports of EUnetHTA written based on the methodology proposed in the HTA Core Model®. The reports were analyzed using the following parameters: competency of the person/group who conducted ethical analysis, assessment elements, and the methodology of ethical analysis. RESULTS: The results show that, although the HTA Core Model® helped to standardize the final reports of the assessment, there are still concerns regarding the competency of the ethical analysis team, the perspectives on the purpose of ethical analysis, data sources and viewpoints of various stakeholders, use of ethical analysis methodology, and the evaluation of the ethical appropriateness of the entire HTA process. CONCLUSIONS: The HTA Core Model® helped to standardize the final reports on the HTA; however, not all issues with the content and outcomes were solved. The lack of expertise in ethics and insufficiency of the teams regarding ethical analysis are other existing problems. This study also demonstrated that stakeholder viewpoints in general and patient perspectives, in particular, have been overlooked in the HTA process.

To be an honest person or not to be a cheater: Replicating the effect of messages relating to the self on unethical behaviour.

Previous research has found that negative-valence appeals relating to the self (Don't be a cheater) are more effective at reducing unethical behaviour than appeals relating to behaviour (Don't cheat). We aimed to replicate these findings and examine whether positive-valence appeals relating to the self (Be an honest person) and to behaviour (Answer honestly) could have a similar effect. We ran five experiments with Israeli and U.S. samples, using social interaction and anonymous settings, and different methodologies: Die roll, coin-flip and number choice. A meta-analysis of the five experiments revealed a small effect of the self-appeals relative to the behaviour-appeals. These findings provide additional support for the theoretical explanation offered in terms of the role of the self in regulating unethical behaviour. However, the effect sizes found in our experiments were smaller than the ones previously reported. We discuss the merit in using self-appeals to reduce unethical behaviour, the possible advantage of positive-valence self-appeals, and the possible moderating role of the setting in which the behaviour takes place: Social interaction versus anonymous settings.

What is the ethics of ageing?

Applied ethics is home to numerous productive subfields such as procreative ethics, intergenerational ethics and environmental ethics. By contrast, there is far less ethical work on ageing, and there is no boundary work that attempts to set the scope for 'ageing ethics' or the 'ethics of ageing'. Yet ageing is a fundamental aspect of life; arguably even more fundamental and ubiquitous than procreation. To remedy this situation, I examine conceptions of what the ethics of ageing might mean and argue that these conceptions fail to capture the requirements of the desired subfield. The key reasons for this are, first, that they view ageing as something that happens only when one is old, thereby ignoring the fact that ageing is a process to which we are all subject, and second that the ageing person is treated as an object in ethical discourse rather than as its subject. In response to these shortcomings I put forward a better conception, one which places the ageing person at the centre of ethical analysis, has relevance not just for the elderly and provides a rich yet workable scope. While clarifying and justifying the conceptual boundaries of the subfield, the proposed scope pleasingly broadens the ethics of ageing beyond common negative associations with ageing.

Methods for Practising Ethics in Research and Innovation: A Literature Review, Critical Analysis and Recommendations.

This paper provides a systematic literature review, analysis and discussion of methods that are proposed to practise ethics in research and innovation (R&I). Ethical considerations concerning the impacts of R&I are increasingly important, due to the quickening pace of technological innovation and the ubiquitous use of the outcomes of R&I processes in society. For this reason, several methods for practising ethics have been developed in different fields of R&I. The paper first of all presents a systematic search of academic sources that present and discuss such methods. Secondly, it provides a categorisation of these methods according to three main kinds: (1) ex ante methods, dealing with emerging technologies, (2) intra methods, dealing with technology design, and (3) ex post methods, dealing with ethical analysis of existing technologies. Thirdly, it discusses the methods by considering problems in the way they deal with the uncertainty of technological change, ethical technology design, the identification, analysis and resolving of ethical impacts of technologies and stakeholder participation. The results and discussion of our literature review are valuable for gaining an overview of the state of the art and serve as an outline of a future research agenda of methods for practising ethics in R&I.

The Ethics of Technology: Response to Critics.

The Ethics of Technology: A Geometric Analysis of Five Moral Principles proposes five moral principles for analyzing ethical issues related to engineering and technology. The objections raised by several authors to the multidimensional scaling technique used in the book reveal a lack of familiarity with this widely used technique.

Maqasid al-Shariah as a Complementary Framework for Conventional Bioethics: Application in Malaysian Assisted Reproductive Technology (ART) Fatwa.

Rapid development in the area of assisted reproductive technology (ART), has benefited mankind by addressing reproductive problems. However, the emergence of new technologies and techniques raises various issues and discussions among physicians and the masses, especially on issues related to bioethics. Apart from solutions provided using conventional bioethics framework, solutions can also be derived via a complementary framework of bioethics based on the Higher Objectives of the Divine Law (Maqasid al-Shariah) in tackling these problems. This approach in the Islamic World has been applied and localised in the Malaysian context. Thus, this paper highlights a conceptual theoretical framework for solving current bioethical issues, with a special focus on ART in the Malaysian context, and compares this theory with conventional theories of bioethics.

An Ethical (Descriptive) Framework for Judgment of Actions and Decisions in the Construction Industry and Engineering-Part I.

The construction industry is usually characterized as a fragmented system of multiple-organizational entities in which members from different technical backgrounds and moral values join together to develop a particular business or project. The greatest challenge in the construction process for the achievement of a successful practice is the development of an outstanding reputation, which is built on identifying and applying an ethical framework. This framework should reflect a common ethical ground for myriad people involved in this process to survive and compete ethically in today's turbulent construction market. This study establishes a framework for ethical judgment of behavior and actions conducted in the construction process. The framework was primarily developed based on the essential attributes of business management identified in the literature review and subsequently incorporates additional attributes identified to prevent breaches in the construction industry and common ethical values related to professional engineering. The proposed judgment framework is based primarily on the ethical dimension of professional responsibility. The Ethical Judgment Framework consists of descriptive approaches involving technical, professional, administrative, and miscellaneous terms. The framework provides the basis for judging actions as either ethical or unethical. Furthermore, the framework can be implemented as a form of preventive ethics, which would help avoid ethical dilemmas and moral allegations. The framework can be considered a decision-making model to guide actions and improve the ethical reasoning process that would help individuals think through possible implications and consequences of ethical dilemmas in the construction industry.

The Value of Darkness: A Moral Framework for Urban Nighttime Lighting.

The adverse effects of artificial nighttime lighting, known as light pollution, are emerging as an important environmental issue. To address these effects, current scientific research focuses mainly on identifying what is bad or undesirable about certain types and uses of lighting at night. This paper adopts a value-sensitive approach, focusing instead on what is good about darkness at night. In doing so, it offers a first comprehensive analysis of the environmental value of darkness at night from within applied ethics. A design for values orientation is utilized to conceptualize, define, and categorize the ways in which value is derived from darkness. Nine values are identified and categorized via their type of good, temporal outlook, and spatial characteristics. Furthermore, these nine values are translated into prima facie moral obligations that should be incorporated into future design choices, policy-making, and innovations to nighttime lighting. Thus, the value of darkness is analyzed with the practical goal of informing future decision-making about urban nighttime lighting.

Organizing a Collaborative Development of Technological Design Requirements Using a Constructive Dialogue on Value Profiles: A Case in Automated Vehicle Development.

Following societal and policy pressures for responsible innovation, innovators are more and more expected to consider the broader socio-ethical context of their work, and more importantly, to integrate such considerations into their daily practices. This may require the involvement of 'outsiders' in innovation trajectories, including e.g. societal and governmental actors. However, methods on how to functionally organize such integration in light of responsible innovation have only recently started to emerge. We present an approach to do just that, in which we first develop value profiles of the involved actors, and second, design a workshop setting that allows innovators to develop design requirements in collaboration with representatives of parties that are not usually involved in such innovation design practices. Using a case study in automated vehicle development, we positively demonstrate the possibility and utility of our approach. We stress that in this study we wish to demonstrate the functionality of our developed method, and did not search for scientifically valid outcomes regarding this technical field.

Nursing students' perceptions of faculty members' ethical/unethical attitudes.

BACKGROUND: Through education, individuals acquire knowledge, skill and attitudes that facilitate professional socialization; it involves intellectual, emotional and psychomotor skill development. Teachers are role models for behaviour modification and value development. OBJECTIVE: To examine students' perceptions of faculty members' ethical and unethical attitudes during interactions in undergraduate nursing. RESEARCH DESIGN: This descriptive study consisted of two phases. In Phase I, we developed an instrument, which was administered to nursing students to assess validity and reliability. Exploratory factor analysis yielded 32 items. Cronbach's α was 0.83, and test-retest reliability was good. In Phase II, a 32-item version of the instrument was administered to nursing students from another university. Participants and research context: Participants included 219 nursing students from one university in Phase I and 196 from another university in Phase II. The study was conducted at the universities attended by the participants. Ethical considerations: Ethical approval was granted by the institutions involved, and all participants provided informed consent. FINDINGS: In Phase I, the instrument demonstrated good psychometric properties for measuring nursing students' perceptions of faculty members' ethical and unethical behaviours. In Phase II, students considered certain professional and personal qualities, including respecting confidentiality and students' private lives and assuming an impartial stance during interactions in the classroom, examinations, or clinical practice, ethical. They considered using obscene examples or unprofessional speech during teaching, selling textbooks in class, using university facilities for personal interests, engaging in romantic relationships with students, and humiliating students in front of patients or staff in clinical settings unethical. CONCLUSION: Results of this study suggest that nurse educators should be aware of their critical role in the teaching-learning process, and they must scrutinize their attitudes towards students from an ethical point of view.

Emotional reactions to human reproductive cloning.

BACKGROUND: Extant surveys of people's attitudes towards human reproductive cloning focus on moral judgements alone, not emotional reactions or sentiments. This is especially important given that some (especially Leon Kass) have argued against such cloning on the ground that it engenders widespread negative emotions, like disgust, that provide a moral guide. OBJECTIVE: To provide some data on emotional reactions to human cloning, with a focus on repugnance, given its prominence in the literature. METHODS: This brief mixed-method study measures the self-reported attitudes and emotions (positive or negative) towards cloning from a sample of participants in the USA. RESULTS: Most participants condemned cloning as immoral and said it should be illegal. The most commonly reported positive sentiment was by far interest/curiosity. Negative emotions were much more varied, but anxiety was the most common. Only about a third of participants selected disgust or repugnance as something they felt, and an even smaller portion had this emotion come to mind prior to seeing a list of options. CONCLUSIONS: Participants felt primarily interested and anxious about human reproductive cloning. They did not primarily feel disgust or repugnance. This provides initial empirical evidence that such a reaction is not appropriately widespread.

Ethical analysis in HTA of complex health interventions.

BACKGROUND: In the field of health technology assessment (HTA), there are several approaches that can be used for ethical analysis. However, there is a scarcity of literature that critically evaluates and compares the strength and weaknesses of these approaches when they are applied in practice. In this paper, we analyse the applicability of some selected approaches for addressing ethical issues in HTA in the field of complex health interventions. Complex health interventions have been the focus of methodological attention in HTA. However, the potential methodological challenges for ethical analysis are as yet unknown. METHODS: Six of the most frequently described and applied ethical approaches in HTA were critically assessed against a set of five characteristics of complex health interventions: multiple and changing perspectives, indeterminate phenomena, uncertain causality, unpredictable outcomes, and ethical complexity. The assessments are based on literature and the authors' experiences of developing, applying and assessing the approaches. RESULTS: The Interactive, participatory HTA approach is by its nature and flexibility, applicable across most complexity characteristics. Wide Reflective Equilibrium is also flexible and its openness to different perspectives makes it better suited for complex health interventions than more rigid conventional approaches, such as Principlism and Casuistry. Approaches developed for HTA purposes are fairly applicable for complex health interventions, which one could expect because they include various ethical perspectives, such as the HTA Core Model® and the Socratic approach. CONCLUSION: This study shows how the applicability for addressing ethical issues in HTA of complex health interventions differs between the selected ethical approaches. Knowledge about these differences may be helpful when choosing and applying an approach for ethical analyses in HTA. We believe that the study contributes to increasing awareness and interest of the ethical aspects of complex health interventions in general.

Steps toward improving ethical evaluation in health technology assessment: a proposed framework.

BACKGROUND: While evaluation of ethical aspects in health technology assessment (HTA) has gained much attention during the past years, the integration of ethics in HTA practice still presents many challenges. In response to the increasing demand for expansion of health technology assessment (HTA) methodology to include ethical issues more systematically, this article reports on a multi-stage study that aimed at construction of a framework for improving the integration of ethics in HTA. METHODS: The framework was developed through the following phases: 1) a systematic review and content analysis of guidance documents for ethics in HTA; 2) identification of factors influencing the integration of ethical considerations in HTA; 3) preparation of an action-oriented framework based on the key elements of the existing guidance documents and identified barriers to and facilitators of their implementation; and 4) expert consultation and revision of the framework. RESULTS: The proposed framework consists of three main components: an algorithmic flowchart, which exhibits the different steps of an ethical inquiry throughout the HTA process, including: defining the objectives and scope of the evaluation, stakeholder analysis, assessing organizational capacity, framing ethical evaluation questions, ethical analysis, deliberation, and knowledge translation; a stepwise guide, which focuses on the task objectives and potential questions that are required to be addressed at each step; and a list of some commonly recommended or used tools to help facilitate the evaluation process. CONCLUSIONS: The proposed framework can be used to support and promote good practice in integration of ethics into HTA. However, further validation of the framework through case studies and expert consultation is required to establish its utility for HTA practice.

Cluster randomized trial assessing the effects of rapid ethical assessment on informed consent comprehension in a low-resource setting.

BACKGROUND: Maximizing comprehension is a major challenge for informed consent processes in low-literacy and resource-limited settings. Application of rapid qualitative assessments to improve the informed consent process is increasingly considered useful. This study assessed the effects of Rapid Ethical Assessment (REA) on comprehension, retention and quality of the informed consent process. METHODS: A cluster randomized trial was conducted among participants of HPV sero-prevalence study in two districts of Northern Ethiopia, in 2013. A total of 300 study participants, 150 in the intervention and 150 in the control group, were included in the study. For the intervention group, the informed consent process was designed with further revisions based on REA findings. Informed consent comprehension levels and quality of the consent process were measured using the Modular Informed Consent Comprehension Assessment (MICCA) and Quality of Informed Consent (QuIC) process assessment tools, respectively. RESULT: Study recruitment rates were 88.7 % and 80.7 % (p = 0.05), while study retention rates were 85.7 % and 70.3 % (p < 0.005) for the intervention and control groups respectively. Overall, the mean informed consent comprehension scores for the intervention and control groups were 73.1 % and 45.2 %, respectively, with a mean difference in comprehension score of 27.9 % (95 % CI 24.0 % - 33.4 %; p < 0.001,). Mean scores for quality of informed consent for the intervention and control groups were 89.1 % and 78.5 %, respectively, with a mean difference of 10.5 % (95 % CI 6.8 -14.2 %; p < 0.001). CONCLUSION: Levels of informed consent comprehension, quality of the consent process, study recruitment and retention rates were significantly improved in the intervention group. We recommend REA as a potential modality to improve informed consent comprehension and quality of informed consent process in low resource settings.

The Pedagogical Challenges of Teaching High School Bioethics: Insights from the Exploring Bioethics Curriculum.

A belief that high school students have the cognitive ability to analyze and assess moral choices and should be encouraged to do so but have rarely been helped to do so was the motivation for developing Exploring Bioethics, a six-module curriculum and teacher guide for grades nine through twelve on ethical issues in the life sciences. A multidisciplinary team of bioethicists, science educators, curriculum designers, scientists, and high school biology teachers worked together on the curriculum under a contract between the National Institutes of Health and Education Development Center, a nonprofit research and development organization with a long history of innovation in science education. At the NIH, the Department of Bioethics within the Clinical Center and the Office of Science Education within the Office of the Director guided the project.Our overarching goal for Exploring Bioethics was to introduce students to bioethics as a field of inquiry and to enable them to develop ethical reasoning skills so they could move beyond "gut reactions" to more nuanced positions.

Engineering Values Into Genetic Engineering: A Proposed Analytic Framework for Scientific Social Responsibility.

Recent experiments have been used to "edit" genomes of various plant, animal and other species, including humans, with unprecedented precision. Furthermore, editing the Cas9 endonuclease gene with a gene encoding the desired guide RNA into an organism, adjacent to an altered gene, could create a "gene drive" that could spread a trait through an entire population of organisms. These experiments represent advances along a spectrum of technological abilities that genetic engineers have been working on since the advent of recombinant DNA techniques. The scientific and bioethics communities have built substantial literatures about the ethical and policy implications of genetic engineering, especially in the age of bioterrorism. However, recent CRISPr/Cas experiments have triggered a rehashing of previous policy discussions, suggesting that the scientific community requires guidance on how to think about social responsibility. We propose a framework to enable analysis of social responsibility, using two examples of genetic engineering experiments.

Theoretical frameworks used to discuss ethical issues in private physiotherapy practice and proposal of a new ethical tool.

In the past, several researchers in the field of physiotherapy have asserted that physiotherapy clinicians rarely use ethical knowledge to solve ethical issues raised by their practice. Does this assertion still hold true? Do the theoretical frameworks used by researchers and clinicians allow them to analyze thoroughly the ethical issues they encounter in their everyday practice? In our quest for answers, we conducted a literature review and analyzed the ethical theoretical frameworks used by physiotherapy researchers and clinicians to discuss the ethical issues raised by private physiotherapy practice. Our final analysis corpus consisted of thirty-nine texts. Our main finding is that researchers and clinicians in physiotherapy rarely use ethical knowledge to analyze the ethical issues raised in their practice and that gaps exist in the theoretical frameworks currently used to analyze these issues. Consequently, we developed, for ethical analysis, a four-part prism which we have called the Quadripartite Ethical Tool (QET). This tool can be incorporated into existing theoretical frameworks to enable professionals to integrate ethical knowledge into their ethical analyses. The innovative particularity of the QET is that it encompasses three ethical theories (utilitarism, deontologism, and virtue ethics) and axiological ontology (professional values) and also draws on both deductive and inductive approaches. It is our hope that this new tool will help researchers and clinicians integrate ethical knowledge into their analysis of ethical issues and contribute to fostering ethical analyses that are grounded in relevant philosophical and axiological foundations.