. The potential for financial conflicts of interest to influence scientific research has become a significant concern. Some commentators have suggested that the development of standardized study protocols could help to alleviate these problems. This paper identifies two problems with this solution: scientific research incorporates numerous methodological judgments that cannot be constrained by standardized protocols; and standardization can hide significant value judgments. These problems arise because of four weaknesses of standardized guidelines: incompleteness, limited applicability, selective ignorance, and ossification. Therefore, (...) the standardization of study designs should not serve as an alternative to addressing the interests and power relations that pervade science policy-making. Policy makers should take at least two steps to prevent powerful interest groups from co-opting standardized guidelines. First, their development and review should be made as transparent as possible and should be subjected to broadly-based deliberation. Second, standardized guidelines should be supplemented with efforts to scrutinize the conditions under which financial COIs tend to have the most worrisome effects so that additional steps can be taken to eliminate and mitigate those conditions. (shrink)

This review considers ethical challenges to research design and informed consent in biomedical and behavioral studies conducted in resource-poor settings. A review of the literature explores relevant social, cultural, and ethical issues in the conduct of biomedical and social health research in developing countries. Ten case vignettes illustrate ethical challenges that arise in international research with culturally diverse populations. Recommendations for researchers and policy-makers concerned about ethical practices in multinational studies conducted in resource-poor settings are also listed.

BackgroundEthics is the science of moral and ethical rules recognised in human life and attempts to verify what is morally right and wrong. Healthcare ethics is seen as an integrated part of the daily activities of health facilities. Healthcare professionals’ standardisation and uniformity in healthcare ethics are urgent and basic requirements. Therefore, this study aimed to assess the practice of the code of ethics and associated factors among health professionals in Central Gondar Zone public hospitals, Northwest Ethiopia, 2021.MethodsA facility-based (...) cross-sectional study design with a mixed method was conducted on 631 health professionals from Central Gondar Zone public hospitals. For the quantitative part, pre-tested self-administered questionnaires were used, and for the qualitative part, key informant interviews with a semi-structured questionnaire were used. Variables with a p value of < 0.2 in binary logistic regression entered into a multivariable logistic regression, then p value < 0.05 and AOR were used to declare statistically significant variables in quantitative data. A thematic content analysis was used for qualitative data analysis.ResultsThis study revealed that only 286 health professionals had good practice of the code of ethics. Good ethical knowledge, favourable attitude, and satisfaction of health professionals with their jobs were significantly associated with the practice of health care ethics.ConclusionsHealth professionals' overall level of practice of health care ethics in the Central Gondar Zone public hospitals was poor. This necessitates practical training, ongoing follow-up, availing of necessary medical equipment, a smooth working environment, and modification of the recognition system for health professionals. (shrink)

Background: Authors are required to describe in their manuscripts ethical approval from an appropriate committee and how consent was obtained from participants when research involves human participants.Objective: To assess the reporting of these protections for several study designs in general medical journals.Design: A consecutive series of research papers published in the Annals of Internal Medicine, BMJ, JAMA, Lancet and The New England Journal of Medicine between February and May 2003 were reviewed for the reporting of ethical approval and (...) patient consent. Ethical approval, name of approving committee, type of consent, data source and whether the study used data collected as part of a study reported elsewhere were recorded. Differences in failure to report approval and consent by study design, journal and vulnerable study population were evaluated using multivariable logistic regression.Results: Ethical approval and consent were not mentioned in 31% and 47% of manuscripts, respectively. 88 papers failed to report both approval and consent. Failure to mention ethical approval or consent was significantly more likely in all study designs than in randomised controlled trials . Failure to mention approval was most common in the BMJ and was significantly more likely than in The New England Journal of Medicine. Failure to mention consent was most common in the BMJ and was significantly more likely than in all other journals. No significant differences in approval or consent were found when comparing studies of vulnerable and non-vulnerable participants.Conclusion: The reporting of ethical approval and consent in RCTs has improved, but journals are less good at reporting this information for other study designs. Journals should publish this information for all research on human participants. (shrink)

The contribution of inherited non‐genetic factors to complex diseases is of great current interest. The ways in which mothers and fathers can affect their offspring's health clearly differ as a result of the intimate interactions between mother and offspring during pre‐ and postnatal life. There is, however, potential for some overlap in mechanisms, particularly epigenetic mechanisms. A small number of epidemiological studies and animal models have investigated the non‐genetic contribution of the parents to offspring health. Discovering new mechanisms of disease (...) inheritance is technically difficult, especially in genetically, socially and environmentally heterogeneous human populations. Therefore, rigorous experimental design, appropriate sample numbers and the use of high‐throughput technologies are necessary to provide convincing evidence. Based on recent examples from the literature, here we propose several ways to improve human studies that aim to identify the underlying mechanisms of transgenerational inheritance of metabolic disease. (shrink)

BackgroundOver the past two decades, Uganda has experienced a significant increase in clinical research driven by both academia and industry. This has been combined with a broader spectrum of research proposals, with respect to methodologies and types of intervention that need evaluation by Research Ethics Committees (RECs) with associated increased requirement for expertise. We assessed the competencies of REC members regarding review of research protocols with complex and emerging research study designs. The aim was to guide development of a (...) training curriculum to improve the quality of scientific and ethical review.MethodsThis was a cross-sectional study design, with quantitative data collection methods. Research Ethics Committee members completed a structured pre-coded questionnaire on current competence with complex and emerging study design. REC members were asked to outline a list of additional topics for which they needed training. Data from coded questions were entered into Epidata Version 3.1 and then exported to STATA Version14.1 for analysis. Descriptive analysis was performed and findings are presented using percentages and frequencies.ResultsWe enrolled 55 REC members from 6 RECs who have a total of 97 members. The majority of whom were males (56.4%, n = 31/55). The level of competence for review of selected study design was lowest for Controlled Human Infection Model (10.9%, n = 6) and reverse pharmacology design (10.9%, n = 6), and highest for cluster randomized study design (52.7%, n = 29) and implementation science research (52.7%, n = 29).ConclusionCompetence for review of research protocols with complex and emerging study design was low among participating REC members. We recommend prioritising training of REC members on complex and emerging study designs to enhance quality of research protocol review. (shrink)

The use of transcranial Electrical Stimulation in the modulation of cognitive brain functions to improve neuropsychiatric conditions has extensively increased over the decades. tES techniques have also raised new challenges associated with study design, stimulation protocol, functional specificity, and dose-response relationship. In this paper, we addressed challenges through the emerging methodology to investigate the dose-response relationship of High Definition-transcranial Direct Current Stimulation, identifying the role of negative valence in tinnitus perception. In light of the neurofunctional testable framework and (...) tES application, hypotheses were formulated to measure clinical and surrogate endpoints. We posited that conscious pairing adequately pleasant stimuli with tinnitus perception results in correction of the loudness misperception and would be reinforced by concurrent active HD-tDCS on the left Dorsolateral Prefrontal Cortex. The dose-response relationship between HD-tDCS specificity and the loudness perception is also modeled. We conducted a double-blind, randomized crossover pilot study with six recruited tinnitus patients. Accrued data was utilized to design a well-controlled adaptive seamless Bayesian dose-response study. The sample size and optimum interims were anticipated for adaptive decision-making about efficacy, safety, and single session dose parameters. Furthermore, preliminary pilot study results were sufficient to show a significant difference within the longitudinally detected self-report tinnitus loudness between before and under positive emotion induction. This study demonstrated a research methodology used to improve emotion regulation in tinnitus patients. In the projected method, positive emotion induction is essential for promoting functional targeting under HD-tDCS anatomical specificity to indicate the efficacy and facilitate the dose-finding process. The continuous updating of prior knowledge about efficacy and dose during the exploratory stage adapts the anticipated dose-response model. Consequently, the effective dose range to make superiority neuromodulation in correcting loudness misperception of tinnitus will be redefined. Highly effective dose adapts the study to a standard randomized trial and transforms it into the confirmatory stage in which active HD-tDCS protocol is compared with a sham trial. Establishing the HD-tDCS intervention protocols relying on this novel method provides reliable evidence for regulatory agencies to approve or reject the efficacy and safety. Furthermore, this paper supports a technical report for designing multimodality data-driven complementary investigations in emotion regulation, including EEG-driven neuro markers, Stroop-driven attention biases, and neuroimaging-driven brain network dynamics. (shrink)

Discovery science in health over the past two decades has embraced, with considerable enthusiasm, the potential of two movements: precision medicine and the ascent of big data. Each of these developments has been suggested to hold substantial promise both to advance our health science and to lead to the development of approaches that can improve health.Precision medicine—emerging naturally from the Human Genome Project almost two decades ago—promises to use genomic and molecular approaches to identify the causes of disease particular to (...) individuals with the end of helping develop tailored treatments and interventions. This approach builds on what is perhaps a deeply held... (shrink)

Throughout the last decades, scientific and therapeutic communities have made common efforts to collect reliable information concerning the efficacy of psychotherapies. One of these initiatives has, recently, involved the psychodrama community and its desire to achieve progress in the validation of this therapy. Based on Robert Elliot's Hermeneutic Single Case Efficacy Design (HSCED), we followed five participants (3 women, 2 men, aged 27-48) of a psychodrama group over the course of their therapeutic process, which ranged from 24 months to (...) 5 years. We chose one of them for the single case study. Quantitative outcome measures included the Portuguese versions of the Revised Spontaneity Assessment Inventory, Clinical Outcome Routine Evaluation and the individualized Personal Questionnaire. Qualitative process measures included Helpful Aspects of Therapy Form and the Client Change Interview. Participants generally reported improvement in their personal therapeutic goals, decrease in symptoms and life problems, and some showed a marked increase in spontaneity levels. In the single case presented, these results are confirmed, and following decision criteria it is possible to assert that the participant improved in all the variables assessed and that therapy is the main cause of these changes. Furthermore, the participant frequently rated psychodrama sessions as being helpful and stated they had a transformational impact on his life. This research contributes towards validating psychodrama as an efficient therapeutic method, hopefully stimulating practitioners to integrate therapy and research - which, for years, were considered independent and incompatible - and to facilitate their use in a complementary way. (shrink)

Human germline gene editing is often debated in hypothetical terms: if it were safe and efficient, on what further conditions would it then be ethically acceptable? This paper takes another course. The key question is: how can scientists reduce uncertainty about safety and efficiency to a level that may justify initiation of first-time clinical trials? The only way to proceed is by well-designed preclinical studies. However, what kinds of investigation should preclinical studies include and what specific conditions should they satisfy (...) in order to be considered well-designed? It is argued that multispecies and multigenerational animal studies are needed as well as human embryo editing without implantation. In order to be possible to translate to first-time clinical trials, animal studies need to satisfy strict conditions of validity. Moreover, embryo studies intended for translation to first-time clinical trials need to correspond to the animal studies in experimental design. Only in this way can uncertainty about risk for harm and prospect of benefit in first-time clinical trials be reduced to a modest level. If uncertainty is not reduced to such a level, first-time clinical trials in germline gene editing should not be initiated. (shrink)

Human germline gene editing is often debated in hypothetical terms: if it were safe and efficient, on what further conditions would it then be ethically acceptable? This paper takes another course. The key question is: how can scientists reduce uncertainty about safety and efficiency to a level that may justify initiation of first-time clinical trials? The only way to proceed is by well-designed preclinical studies. However, what kinds of investigation should preclinical studies include and what specific conditions should they satisfy (...) in order to be considered well-designed? It is argued that multispecies and multigenerational animal studies are needed as well as human embryo editing without implantation. In order to be possible to translate to first-time clinical trials, animal studies need to satisfy strict conditions of validity. Moreover, embryo studies intended for translation to first-time clinical trials need to correspond to the animal studies in experimental design. Only in this way can uncertainty about risk for harm and prospect of benefit in first-time clinical trials be reduced to a modest level. If uncertainty is not reduced to such a level, first-time clinical trials in germline gene editing should not be initiated. (shrink)

Novel immune therapies are increasingly based on the molecular differentiation of disease patterns. The related clinical studies are thus more often characterized by the so-called adaptive study designs (umbrella or basket studies including platform studies), which are continuously adjusted based on novel results. This paper analyses new study designs beyond the often-postulated need for regulation in order to identify ethical problems based on typical structural features and to—whenever possible—suggest solutions. To do so, it addresses the following topics: the (...) relationship between social and scientific values of a study as well as aspects of the scientific validity of new forms of evidence; the inclusion of study subjects under the condition of relative uncertainty; specific challenges in the process of ethical approval, and ethical and practical challenges in the process of informing patients and receiving informed consent. Additionally, the topic of a potential risk–benefit assessment of such therapies is addressed. (shrink)

We explore the relationship between ethnomethodology (EM), ethnography and the needs of managers and designers in industry, considering both ethnomethodological and industrial criteria of adequacy and explicating their relationship through the concept of “audience.” We examine a range of studies in this light, with a view to their possible candidacy as hybrid studies and identify three types of application of EM studies of work: market research, design, and business improvement. Application in the first of these fields we dub “anthropological,” (...) in that it consists in studying and reporting back on the ways of exotic people (customers). This is the application most commonly found in studies of computer supported co-operative work (CSCW). A second CSCW application, “technomethodology,” involves the introduction of EM concepts into the design process. A further application, dubbed “holding-up-a-mirror,” involves reporting back to members of a setting upon their own activities. We argue that technomethodology and holding-up-a-mirror both offer the possibility of creating hybrid disciplines. We consider the objection that improvement and design involve the introduction of value judgements that threaten the practice of EM indifference, arguing that action research can serve as a guarantee of unique adequacy (UA) by testing the researcher’s understanding as analysis in action in the setting. Furthermore, the standard of reporting required by the UA criterion contributes to the effectiveness of proposed solutions. (shrink)

The need to make young scientists aware of their social responsibilities is widely acknowledged, although the question of how to actually do it has so far gained limited attention. A 2-day workshop entitled “Prepared for social responsibility?” attended by doctoral students from multiple disciplines in climate science, was targeted at the perceived needs of the participants and employed a format that took them through three stages of ethics education: sensitization, information and empowerment. The workshop aimed at preparing doctoral students to (...) manage ethical dilemmas that emerge when climate science meets the public sphere (e.g., to identify and balance legitimate perspectives on particular types of geo-engineering), and is an example of how to include social responsibility in doctoral education. The paper describes the workshop from the three different perspectives of the authors: the course teacher, the head of the graduate school, and a graduate student. The elements that contributed to the success of the workshop, and thus make it an example to follow, are (1) the involvement of participating students, (2) the introduction of external expertise and role models in climate science, and (3) a workshop design that focused on ethical analyses of examples from the climate sciences. (shrink)

Smart homes represent an effective approach to improve one’s quality of life. Developing user interfaces that are both comfortable and understandable can assist users, particularly the elderly, embrace smart home technologies. It’s critical to concentrate on the characteristics of smart home interface design and their impact on people of various ages. Since sliders are one of the most common components utilized in the smart home user interface, this article aimed to investigate the effects of slider design characteristics on (...) user performance and preference. Thirty-four participants were recruited for the experiment. Our results revealed that both groups had shorter task completion time, less fixation time, and saccades on horizontal sliding orientation and larger buttons, which means better user performance. For the older group, the slider with color gradient track led to better user performance, while the track color only had less effect on the performance of the younger group. In terms of user preference, the results and performance of the older group were basically consistent, while the younger group had no significant difference in sliding orientation and track color. (shrink)

Academic dishonesty is an insidious problem that besets most tertiary institutions, where considerable resources are expended to prevent and manage students' dishonest actions within academia. Using a mixed retrospective and prospective design this research investigated Gottfredson and Hirschi's self-control theory as a possible explanation for academic dishonesty in 264 university students. The relationship between academic dishonesty and general criminality was also examined. A significant but small to moderate relationship between academic dishonesty and general criminality was present, including correlations with (...) general dishonesty, violent crime and drug offending subcategories. These findings suggested that a general criminological theory may be of use in explaining academic dishonesty, but the overall ability of self-control variables to explain academic dishonesty was not strong. Controlled logistic regressions indicated that a significant positive association with academic dishonesty was only present for one of 6 self-control subscales (self-centeredness), and even this association was only present in the prospective study component. A strong relationship between past and future academic dishonesty was present. Implications of the study for institutions are discussed. (shrink)

Employing the National Institute of Mental Health-funded Prevention of Suicide in Primary Care Elderly Collaborative Trial as a case study, we discuss 2 sets of ethical issues: obtaining informed consent for a clinic-based intervention study and using treatment as usual (TAU) as the control condition. We then address these ethical issues in the context of the debate about the quality improvement efforts of health care organizations. Our analysis reveals the tension between ethics and scientific integrity involved with using (...) TAU as a control condition and the difficulty in designing high-quality research in a community-based setting. (shrink)

Employing the National Institute of Mental Health-funded Prevention of Suicide in Primary Care Elderly Collaborative Trial as a case study, we discuss 2 sets of ethical issues: obtaining informed consent for a clinic-based intervention study and using treatment as usual (TAU) as the control condition. We then address these ethical issues in the context of the debate about the quality improvement efforts of health care organizations. Our analysis reveals the tension between ethics and scientific integrity involved with using (...) TAU as a control condition and the difficulty in designing high-quality research in a community-based setting. (shrink)

This paper undertakes a comparative legal study to analyze the challenges of privacy and personal data protection posed by Artificial Intelligence embedded in Robots, and to offer policy suggestions. After identifying the benefits from various AI usages and the risks posed by AI-related technologies, I then analyze legal frameworks and relevant discussions in the EU, USA, Canada, and Japan, and further consider the efforts of Privacy by Design originating in Ontario, Canada. While various AI usages provide great convenience, (...) many issues, including profiling, discriminatory decisions, lack of transparency, and impeding consent, have emerged. The unpredictability arising from the AI machine learning function poses further difficulties, which have only been partially addressed by legal frameworks in the aforementioned jurisdictions. However, analyzing the relevant discussions yielded several suggestions. The first priority is adopting PbD as the most flexible, soft-legal, and preferable approach toward AI-oriented issues. Implementing PbD will protect individual privacy and personal data without specific efforts, and achieve both the development of AI and the advancement of privacy and personal data protection. Technical measures that can adapt to an individual’s dynamic choices according to the “context” should be further developed. Furthermore, alternative technical measures, including those to solve the “algorithmic black box” or achieve differential privacy, warrant thorough examination. If AI surpasses human intelligence, a terminating function, such as a “kill switch” will be the last resort to preserve individual choice. Despite numerous difficulties, we must prepare for the coming AI-prevalent society by taking a flexible approach. (shrink)

This study investigates the significant relationship between mental health and academic motivation among graduating students. Thus, the study employed a correlational design to determine if there is a significant relationship between mental health and academic motivation among 150 graduating college students. Hence, the Mental Health Inventory 38 (MHI-38) and Academic Motivation Scale (AMS-C28) were employed to measure the study variables. Moreover, statistical analysis reveals that the r coefficient of 0.35 indicates a low positive correlation between the (...) variables. The p-value of 0.00, which is less than 0.05, leads to the decision to reject the null hypothesis. (shrink)

BackgroundVideo-calls have proven to be useful for older care home residents in improving socialization and reducing loneliness. Nonetheless, to facilitate the acceptability and usability of a new technological intervention, especially among people with dementia, there is a need for user-led design improvements. The current study conducted focus groups with an embedded activity with older people to allow for a person-centered design of a video-call intervention.MethodsTwenty-eight residents across four care homes in the South West of England participated in (...) focus groups to aesthetically personalize and ‘dress-up’ the equipment used in a video-call intervention. Each care home was provided with a ‘Skype on Wheels’ device, a wheelable ‘chassis’ comprising an iPad or tablet for access to Skype, and a telephone handset. During the focus group, residents were encouraged to participate in an activity using colorful materials to ‘dress-up’ SoW. Comments before, during and after the ‘dress up’ activity were audio recorded. Framework analysis was used to analyze the focus group data.ResultsOlder people, including seven with dementia were able to interact with and implement design changes to SoW through aesthetic personalization. Themes arising from the data included estrangement, anthropomorphism, reminiscence, personalization, need for socialization versus fear of socialization and attitudes toward technology. After this brief exposure to SoW, residents expressed the likelihood of using video-calls for socialization in the future.ConclusionCare home residents enjoy engaging with new technologies when given the opportunity to interact with it, to personalize it and to understand its purpose. Low cost aesthetic personalization of technologies can improve their acceptability, usability, and implementation within complex care environments. (shrink)

General Technology Course in senior high school focuses on skill training and the connection and comprehensive application of interdisciplinary knowledge, and it is a compulsory course for cultivating students' creative potential. However, GTC in domestic senior high school has low teaching efficiency and fails to cultivate students' creativity well. Fortunately, after years of theoretical and practical research in China, the Maker Education, which focuses on cultivating students' innovative ability, has produced well-recognized applied research results. For this reason, this paper integrates (...) the theories of ME into GTC. Combined the characteristics of ME and GTC, and followed the process of creation and the law of the expression of personality traits, we build a model of GTC based on ME to improve students' creativity effectively. In order to improve and optimize the designed teaching model, this study carried out three rounds of Action Research, designed the practical activities of GTC in senior high school, and revised the teaching model through action, observation and reflection continuously. Finally, this paper designed an experimental group and a control group. The experimental group adopts the recommended General Technology teaching model, and the control group adopts the traditional teaching model. Students were asked tested to take pre-test and post-test, and SPSS was used for analysis of ANCOVA and T-test. After analysis, the following experimental results were obtained: the teaching model proposed in this paper can improve students' creativity significantly and effectively; the adventurous, curiosity, imagination, challenge of students also have significant positive improvement. (shrink)

Previously, language teaching has been focused on the passive learning of the alphabet. In addition, the research on teaching listening and speaking skills was limited. Listening skill is the key to learning a language, and speaking is the first explicit behavior of language. In order to improve language skills which are emphasized in new curriculum guidelines, student-centered thematic language teaching is considered as valuable. Through this, the concepts of multiple intelligences and curriculum integration were re-emphasized. An experimental design was (...) adopted in the current study. This study was conducted with the participation of 224 students from the Department of Multimedia Design in universities in the south of Taiwan. The research data were collected between September 2021 and December 2021. The implementation process took 16 weeks of thematic language teaching. The research results revealed 1. significant positive effects of thematic language teaching on listening, 2. significant positive effects of thematic language teaching on speaking skill, and 3. significant negative effects of thematic language teaching on learning anxiety. According to the results, it is expected that this study can help multimedia design students improve their listening and speaking skills as well as core language skills. (shrink)

The COVID-19 lockdown has significantly disrupted the higher education environment within the Netherlands and led to changes in available study-related resources and study demands of students. These changes in study resources and study demands, the uncertainty and confusion about educational activities, the developing fear and anxiety about the disease, and the implementation of the COVID-19 lockdown measures may have a significant impact on the mental health of students. As such, this study aimed to investigate the (...) trajectory patterns, rate of change, and longitudinal associations between study resources–demands and mental health of 141 university students from the Netherlands before and during the COVID-19 lockdown. The present study employed a longitudinal design and a piecewise latent growth modeling strategy to investigate the changes in study resources and mental health over a 3 month period. The results showed that moderate levels of student resources significantly decreased before, followed by a substantial rate of increase during, lockdown. In contrast, study demands and mental health were reported to be moderate and stable throughout the study. Finally, the growth trajectories of study resources–demands and mental health were only associated before the lockdown procedures were implemented. Despite growing concerns relating to the negative psychological impact of COVID-19 on students, our study shows that the mental health during the initial COVID-19 lockdown remained relatively unchanged. (shrink)

The need to design and build according to the resident’s demands is the best possible option, in today's economic market. Nowadays, buildings that ensure a good thermal performance is increasing. This article compares the thermal transmittance coefficient (U-value) between a wall with a simple composition of bricks, plaster and graffito without thermal insulation and a wall composed of stone wool, anti-vapors membrane, air gap and terracotta tiles (ventilated façade). This comparison explains the thermal benefits and the best ways to (...) increase the thermal performance of a building, in a particular case of Polis University, Tirana, Albania. The results and conclusions drawn from this article are factual indicators with concrete values that professionals should take into consideration since in the initial stage of design. Choosing the best layers for a façade may result in the creation of a comfortable indoor thermal comfort for the inhabitance in a micro perspective. A good thermal insulation improves the building’s thermal balance and contributes decisively to the thermal comfort of the occupants, which means a considerable reduction in heating and cooling loads, in order to increase the building’s energy efficiency. The measurements of this comparative analysis will be done by using a specific instrument such as Testo 435-2. Atmospheric conditions will also be considered during the measurements, respectively for internal and external environments. (shrink)

This paper points out the need for an analytical and ontological reorientation of the field of computer-supported cooperative work (CSCW). It is argued that even though this field is heterogeneous it is marred by general problems of conceptualising the co-constitutive relations between humans and technologies. This is demonstrated through readings of several recent CSCW analyses. It is then suggested that a conceptual improvement can be facilitated by paying attention to newer scientific studies, here exemplified by Pickering, Haraway and Latour.

Background There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. Methods A qualitative descriptive design was used to describe clinician’s perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were (...) members of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. Results From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. Conclusions Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU. (shrink)

The proliferation of electronic databases has given rise to many practices and occurrences that pose serious threats to personal privacy. This paper argues that attention to privacy should be an integral part of the database design process, and that database designers are uniquely positioned to ensure that this happens. To motivate students to become privacy‐conscious database design professionals, computer science programs must meet the challenges of implementing an “ethics across the curriculum” methodology to integrate privacy content throughout the (...) design thread of the introductory database course. (shrink)

When scientists attempt to explain observations of behaviour in humans and other animals, they often use language that evolved for informal discourse among people engaged in every day social interaction, like this: What does the infant/child/adult/chimp/crow perceive/understand/learn/intend? What is he/she/it conscious of? What does he/she/it experience/enjoy/desire? What is he/she/it attending to? Why did he/she/it do X, start Xing, stop Xing, speed up Xing...? Does he/she/it know that...? What did/does he/she/it expect will happen, if...? Similar comments can be made about the (...) terminology used in many philosophical discussions about minds, cognition, language, and the relationships between evolution and learning. (shrink)

OBJECTIVES: To study whether linguistic analysis and changes in information leaflets can improve readability and understanding. DESIGN: Randomised, controlled study. Two information leaflets concerned with trials of drugs for conditions/diseases which are commonly known were modified, and the original was tested against the revised version. SETTING: Denmark. PARTICIPANTS: 235 persons in the relevant age groups. MAIN MEASURES: Readability and understanding of contents. RESULTS: Both readability and understanding of contents was improved: readability with regard to both information leaflets (...) and understanding with regard to one of the leaflets. CONCLUSION: The results show that both readability and understanding can be improved by increased attention to the linguistic features of the information. (shrink)

BackgroundDespite the recognition that developing artificial intelligence (AI) that is trustworthy is necessary for public acceptability and the successful implementation of AI in healthcare contexts, perspectives from key stakeholders are often absent from discourse on the ethical design, development, and deployment of AI. This study explores the perspectives of birth parents and mothers on the introduction of AI-based cardiotocography (CTG) in the context of intrapartum care, focusing on issues pertaining to trust and trustworthiness.MethodsSeventeen semi-structured interviews were conducted with (...) birth parents and mothers based on a speculative case study. Interviewees were based in England and were pregnant and/or had given birth in the last two years. Thematic analysis was used to analyze transcribed interviews with the use of NVivo. Major recurring themes acted as the basis for identifying the values most important to this population group for evaluating the trustworthiness of AI.ResultsThree themes pertaining to the perceived trustworthiness of AI emerged from interviews: (1) trustworthy AI-developing institutions, (2) trustworthy data from which AI is built, and (3) trustworthy decisions made with the assistance of AI. We found that birth parents and mothers trusted public institutions over private companies to develop AI, that they evaluated the trustworthiness of data by how representative it is of all population groups, and that they perceived trustworthy decisions as being mediated by humans even when supported by AI.ConclusionsThe ethical values that underscore birth parents and mothers’ perceptions of trustworthy AI include fairness and reliability, as well as practices like patient-centered care, the promotion of publicly funded healthcare, holistic care, and personalized medicine. Ultimately, these are also the ethical values that people want to protect in the healthcare system. Therefore, trustworthy AI is best understood not as a list of design features but in relation to how it undermines or promotes the ethical values that matter most to its end users. An ethical commitment to these values when creating AI in healthcare contexts opens up new challenges and possibilities for the design and deployment of AI. (shrink)