Mapping ethical, legal, and social implications (ELSI) of preimplantation genetic testing (PGT).

PURPOSE: Preimplantation Genetic Testing (PGT) has attracted considerable ethical, legal, and social scrutiny, but academic debate often fails to reflect clinical realities. METHODS: Addressing this disconnect, a review of 506 articles from 1999 to 2019 across humanities and social sciences was conducted to synthesize the Ethical, Legal, and Social Implications (ELSI) of PGT. This review mined PubMed, WoS, and Scopus databases, using both MeSH terms and keywords to map out the research terrain. RESULTS: The findings reveal a tenfold increase in global research output on PGT's ELSI from 1999 to 2019, signifying rising interest and concern. Despite heightened theoretical discourse on selecting "optimal" offspring, such practices were scarcely reported in clinical environments. Conversely, critical issues like PGT funding and familial impacts remain underexplored. Notably, 86% of the ELSI literature originates from just 12 countries, pointing to a research concentration. CONCLUSION: This review underscores an urgent need for ELSI research to align more closely with clinical practice, promoting collaborations among ethicists, clinicians, policymakers, and economists. Such efforts are essential for grounding debates in practical relevance, ultimately steering PGT towards ethical integrity, societal acceptance, and equitable access, aiming to harmonize PGT research with real-world clinical concerns, enhancing the relevance and impact of future ethical discussions.

Familial and Social Implications of Breast and Gynaecological cancer in Kerala, India.

BACKGROUND: Due to the paucity of reliable data to determine the components of family-based comprehensive care for cancer in India, we explored the familial implications of gynaecological and breast cancer diagnosis and treatment through a mixed-method study. METHODS: The mixed method study included 130 women aged above 18 with a confirmed diagnosis of gynaecological or breast cancer recruited from three selected tertiary hospitals in Kerala, India. Information on quality of life (36-Item Short Form Survey (SF-36)), psychological distress (distress thermometer), and the familial, interpersonal, social, and community impacts of cancer (semi-structured interview guide) were elicited. Linear regression was used to identify the factors associated with distress and the factors were explored further using thematic analysis. RESULTS: Patients included in the study (n = 130; mean age 57.5 years) had moderate or mild (66.9%) to severe (25.4%) distress. Concerns about work (93%), difficulty in; home care and housing (82%), care for dependents (65%), unempathetic family (87.6%), isolation (70%), and body image (65%) were major reasons for their distress. Physiological, social, and family-related stressors among the respondents included challenges in physical functioning, intense physical symptoms like fatigue, loss of appetite and sleep, role restrictions, alterations in family responsibilities, functional dependency, inadequate family support, challenges in social and interpersonal interactions, and an unsupportive work environment. CONCLUSION: Cancer is a health crisis that involves psychological, social, and economic distress, compelling professionals to design multifaceted individualized care packages rather than only concentrating on medical management to alleviate their distress.

Translating a value-based framework for resilient e-learning impact in post COVID-19 times: Research-based Evidence from Higher Education in Kuwait.

The covid-19 pandemic has changed people's daily lives and behaviors all across the world and has impacted practically every element of human existence. The introduction of remote education systems and the move toward online learning have had some of the most significant effects. The on-site operations of educational institutions, such as schools, colleges, and universities, have had to be suspended in order to stop the virus' spread. In order to effectively disseminate instructional material and guarantee the unbroken progression of students' academic endeavors, educators have been forced to look for novel approaches. The study used the Value-Based Adoption Model (VAM) as a conceptual framework to look into the factors that affected Kuwait's e-learning outcomes in the midst of the covid-19 pandemic. 382 students at Kuwaiti universities and colleges were the source of quantitative data collection. The findings revealed that peer interaction emerged as the most influential factor in shaping outcomes within the educational context of Kuwait, while instructors and course design factors were not significant. Using the VAM, this study investigated the impact of several factors on students' e-learning results during times of crisis. The research expands the existing knowledge base in the field on this subject and suggests developing a well-organized online learning crisis approach. The main contribution of this work is summarized on (i) An integrated framework for the quality of the e-learning experience in universities in post-covid-19 times and (ii) A resilient higher education institutional learning strategy model in post-covid-19 times. The findings of this paper can be generalizable to other Gulf Corporation Council (GCC) countries such as Kingdom of Saudi Arabia, Qatar, United Arab Emirates (UAE), Bahrain and Oman. This is due to the shared cultural traditions and values, along with similar educational systems among these nations.

Social and Ethical Implications of Digital Crisis Technologies: Case Study of Pandemic Simulation Models During the COVID-19 Pandemic.

BACKGROUND: Responses to public health crises are increasingly technological in nature, as the prominence of COVID-19-related statistics and simulations amply demonstrates. However, the use of technologies is preconditional and has various implications. These implications can not only affect acceptance but also challenge the acceptability of these technologies with regard to the ethical and normative dimension. OBJECTIVE: This study focuses on pandemic simulation models as algorithmic governance tools that played a central role in political decision-making during the COVID-19 pandemic. To assess the social implications of pandemic simulation models, the premises of data collection, sorting, and evaluation must be disclosed and reflected upon. Consequently, the social construction principles of digital health technologies must be revealed and examined for their effects with regard to social, ethical, and ultimately political issues. METHODS: This case study starts with a systematization of different simulation approaches to create a typology of pandemic simulation models. On the basis of this, various properties, functions, and challenges of these simulation models are revealed and discussed in detail from a socioscientific point of view. RESULTS: The typology of pandemic simulation methods reveals the diversity of model-driven handling of pandemic threats. However, it is reasonable to assume that the use of simulation models could increasingly shift toward agent-based or artificial intelligence models in the future, thus promoting the logic of algorithmic decision-making in response to public health crises. As algorithmic decision-making focuses more on predicting future dynamics than statistical practices of assessing pandemic events, this study discusses this development in detail, resulting in an operationalized overview of the key social and ethical issues related to pandemic crisis technologies. CONCLUSIONS: This study identifies 3 major recommendations for the future of pandemic crisis technologies.

Mapping the educational Frontier: Unleashing the Potential of artificial intelligence talents through cooperative planning in the Guangdong-Hong Kong-Macao greater bay area.

The Guangdong-Hong Kong-Macao Greater Bay Area (GBA) has become an important hub for technological innovation and economic development in China. With the growing demand for artificial intelligence (AI) and big data technology talents, it is essential to develop educational cooperation within the GBA to develop a talent pool that can meet the changing needs in the region. This paper focuses on the development of dynamic demand for AI talents and proposes a strategic planning framework for educational cooperation in the GBA. We use the research idea of common attributes and key chain clustering-factor association selection-analysis of the driving force and subordination among factors-the key characteristics of AI talents. Using collinear analysis of citations and grounded theory methods, an operational definition of the influencing factors of AI talent literacy characteristics is constructed. Using the Interpretative Structural Modeling(ISM) and MICMAC (Matrice d'Impacts Croises-Multipication Applique A Classement), analyze and identify the driving force and subordination of the influencing factors of key traits of talents, and present the combined effect of multi-level factors of key traits of talents. Combined with the educational differences and complementary advantages in the GBA, five strategies and seven implementation suggestions for the GBA's AI talent education cooperation plan are formulated to establish a collaborative ecosystem that promotes the growth and integration of AI in the GBA.

Ethical, legal, and social implications (ELSI) of virtual agents and virtual reality in healthcare.

Virtual agents (VAs) and immersive virtual reality (VR) applications broaden the opportunities for accessing healthcare by transposing certain processes from the analogue world into a virtual realm. While these innovations offer a number of advantages including improved access for individuals in diverse geographic locations and novel therapeutic options, their implementation raises significant ethical, social, and legal implications. Key considerations pertain to the doctor-patient relationship, privacy and data protection, justice, fairness, and equal access as well as to issues of accountability, liability, and safety. This paper conducts a comprehensive review of the existing literature to analyse the ethical, social, and legal ramifications of employing VAs and VR applications in healthcare. It examines the recommended strategies to mitigate potential adverse effects and addresses current research gaps in this domain.

Exploring the Ethical, Legal, and Social Implications of ChatGPT in Urology.

PURPOSE OF THE REVIEW: ChatGPT is programmed to generate responses based on pattern recognition. With this vast popularity and exponential growth, the question arises of moral issues, security and legitimacy. In this review article, we aim to analyze the ethical and legal implications of using ChatGPT in Urology and explore potential solutions addressing these concerns. RECENT FINDINGS: There are many potential applications of ChatGPT in urology, and the extent to which it might improve healthcare may cause a profound shift in the way we deliver our services to patients and the overall healthcare system. This encompasses diagnosis and treatment planning, clinical workflow, patient education, augmenting consultations, and urological research. The ethical and legal considerations include patient autonomy and informed consent, privacy and confidentiality, bias and fairness, human oversight and accountability, trust and transparency, liability and malpractice, intellectual property rights, and regulatory framework. The application of ChatGPT in urology has shown great potential to improve patient care and assist urologists in various aspects of clinical practice, research, and education. Complying with data security and privacy regulations, and ensuring human oversight and accountability are some potential solutions to these legal and ethical concerns. Overall, the benefits and risks of using ChatGPT in urology must be weighed carefully, and a cautious approach must be taken to ensure that its use aligns with human values and advances patient care ethically and responsibly.

Ethical, legal, and social implications of digital health: A needs assessment from the Society of Behavioral Medicine to inform capacity building for behavioral scientists.

The ethical, legal, and social implications (ELSIs) of digital health are important when researchers and practitioners are using technology to collect, process, or store personal health data. Evidence underscores a strong need for digital health ELSI training, yet little is known about the specific ELSI topic areas that researchers and practitioners would most benefit from learning. To identify ELSI educational needs, a needs assessment survey was administered to the members of the Society of Behavioral Medicine (SBM). We sought to identify areas of ELSI proficiency and training need, and also evaluate interest and expertise in ELSI topics by career level and prior ELSI training history. The 14-item survey distributed to SBM members utilized the Digital Health Checklist tool (see recode.health/tools) and included items drawn from the four-domain framework: data management, access and usability, privacy and risk to benefit assessment. Respondents (N = 66) were majority faculty (74.2%) from psychology or public health. Only 39.4% reported receiving "formal" ELSI training. ELSI topics of greatest interest included practices that supported participant engagement, and dissemination and implementation of digital tools beyond the research setting. Respondents were least experienced in managing "bystander" data, having discussions about ELSIs, and reviewing terms of service agreements and privacy policies with participants and patients. There is opportunity for formalized ELSI training across career levels. Findings serve as an evidence base for continuous and ongoing evaluation of ELSI training needs to support scientists in conducting ethical and impactful digital health research.

New technologies are increasingly used in research and practice, which introduce new ethical, legal, and social implications (ELSIs). While there are scholars who study ELSIs in research, it is important that behavioral scientists have ELSI training in order to identify and mitigate possible harms and maximize benefits among their patients/participants, particularly when using technologies that collect personal health information. ELSI training opportunities are limited and, because ELSI is a broad complicated field, we know very little about the specific topics that researchers/practitioners would benefit from learning. To understand ELSI training needs specific to the field of digital health, we asked the members of the Society of Behavioral Medicine, a multidisciplinary nonprofit organization, to tell us about which ELSI areas they are most interested in. We found that 39.4% of members received formal ELSI training. Members were most interested in using technology to help patients/participants stay engaged in their treatments, and developing technologies that can be used outside of research (in the "real world"). Members were least experienced in reviewing terms of service/privacy policies and handling information collected from non-patient/participants (people in the backgrounds of voice recordings/videos). Training interests differed by career level (faculty vs. students), and so future ELSI trainings could be more beneficial if they were mindful of prior experiences.

Human Cloning: Biology, Ethics, and Social Implications.

Abstract: This scholarly article delves into the multifaceted domains of human cloning, encompassing its biological underpinnings, ethical dimensions, and broader societal implications. The exposition commences with a succinct historical and contextual overview of human cloning, segueing into an in-depth exploration of its biological intri-cacies. Central to this biological scrutiny is a comprehensive analysis of somatic cell nuclear transfer (SCNT) and its assorted iterations. The accomplishments and discoveries in cloning technology, such as successful animal cloning operations and advances in the efficiency and viability of cloned embryos, are reviewed. Future improvements, such as reprogramming procedures and gene editing technology, are also discussed. The discourse extends to ethical quandaries intrinsic to human cloning, entailing an extensive contemplation of values such as human dignity, autonomy, and safety. Furthermore, the ramifications of human cloning on a societal plane are subjected to scrutiny, with a dedicated emphasis on ramifications encompassing personal identity, kinship connections, and the fundamental notion of maternity. Culminating the analysis is a reiteration of the imperative to develop and govern human cloning technology judiciously and conscientiously. Finally, it discusses several ethical and practical issues, such as safety concerns, the possibility of exploitation, and the erosion of human dignity, and emphasizes the significance of carefully considering these issues.

NBSTRN Tools to Advance Newborn Screening Research and Support Newborn Screening Stakeholders.

Rapid advances in the screening, diagnosis, and treatment of genetic disorders have increased the number of conditions that can be detected through universal newborn screening (NBS). However, the addition of conditions to the Recommended Uniform Screening Panel (RUSP) and the implementation of nationwide screening has been a slow process taking several years to accomplish for individual conditions. Here, we describe web-based tools and resources developed and implemented by the newborn screening translational research network (NBSTRN) to advance newborn screening research and support NBS stakeholders worldwide. The NBSTRN's tools include the Longitudinal Pediatric Data Resource (LPDR), the NBS Condition Resource (NBS-CR), the NBS Virtual Repository (NBS-VR), and the Ethical, Legal, and Social Issues (ELSI) Advantage. Research programs, including the Inborn Errors of Metabolism Information System (IBEM-IS), BabySeq, EarlyCheck, and Family Narratives Use Cases, have utilized NBSTRN's tools and, in turn, contributed research data to further expand and refine these resources. Additionally, we discuss ongoing tool development to facilitate the expansion of genetic disease screening in increasingly diverse populations. In conclusion, NBSTRN's tools and resources provide a trusted platform to enable NBS stakeholders to advance NBS research and improve clinical care for patients and their families.

Ethical, legal, regulatory, and policy issues concerning embryoids: a systematic review of the literature.

Recent advances in methods to culture pluripotent stem cells to model human development have resulted in entities that increasingly have recapitulated advanced stages of early embryo development. These entities, referred to by numerous terms such as embryoids, are becoming more sophisticated and could resemble human embryos ever more closely as research progresses. This paper reports a systematic review of the ethical, legal, regulatory, and policy questions and concerns found in the literature concerning human embryoid research published from 2016 to 2022. We identified 56 papers that use 53 distinct names or terms to refer to embryoids and four broad categories of ethical, legal, regulatory, or policy considerations in the literature: research justifications/benefits, ethical significance or moral status, permissible use, and regulatory and oversight challenges. Analyzing the full range of issues is a critical step toward fostering more robust ethical, legal, and social implications research in this emerging area and toward developing appropriate oversight.

Learning and happiness during Covid-19 school closure in urban Malaysia.

COVID-19 school closure has disrupted education systems globally raising concerns over learning time loss. At the same time, social isolation at home has seen a decline in happiness level among young learners. Understanding the link between cognitive effort and emotional wellbeing is important for post-pandemic learning recovery interventions particularly if there is a feedback loop from happiness to learning. In this context, we use primary survey data collected during the first school closure in urban Malaysia to study the complex association between learning loss and student happiness. Machine learning methods are used to accommodate the multi-dimensional and interaction effects between the covariates that influence this association. Empirically, we find that the most important covariates are student gender, social economic status (SES) proxied by the number of books ownership, time spent on play and religious activity. Based on the results, we develop a conceptual framework of learning continuity by formalizing the importance of investment in emotional wellbeing.

Acceptability of prenatal diagnosis and prenatal treatment of haemophilia using cell and gene therapies within US haemophilia community.

BACKGROUND: The overall burden of disease in persons with haemophilia continues to be high despite the latest advancements in therapeutics. Clinical trials testing prenatal treatments for several genetic disorders are underway or are recruiting subjects, attesting to the much-needed change in paradigm of how patients with monogenic disorders can be treated. Here we investigate the overall attitude towards prenatal diagnosis, preferences on types of prenatal therapies for haemophilia, the level of 'acceptable' risk tolerated, and which social and moral pressures or disease personal experiences may predict willingness of individuals to consider foetal therapy in a future pregnancy. RESULTS: A multidisciplinary team designed the survey, and the study was carried out using REDCap, and publicized through the National Haemophilia Foundation. Subjects ≥18 years of age were eligible to participate in the study. We assessed participants' attitudes towards prenatal therapy and their level of 'acceptable' risk towards the procedure and therapy. The survey was completed by 67 adults, the majority females. Respondents were willing to undergo prenatal diagnosis, and their main concerns related to the well-being of the pregnant woman and the foetus regarding lasting therapeutic efficacy, side effects of the therapy, and procedural risks, but they were likely to accept a wide range of prenatal therapeutic options, particularly if the foetal therapy proved to be long-lasting and safe. CONCLUSIONS: These data demonstrate the willingness of persons with haemophilia, and the haemophilia community, to explore new treatment options beyond the currently offered approaches.

Mobility and Dual Tasking in the Everyday Lives of Adults with Multiple Sclerosis: A Qualitative Exploration.

OBJECTIVE: The purpose of the study was to understand how people with multiple sclerosis experience dual-tasking situations in their everyday lives. METHODS: Focus groups involving a total of 11 individuals with multiple sclerosis (eight females and three males) participated in this qualitative inquiry. Participants were asked open-ended questions focused on the nature of and consequences around dual tasking when standing or walking. Reflexive thematic analysis was employed to examine the data. RESULTS: Three themes were generated from the data: (a) Life Is a Dual Task, (b) The Social Divide, and (c) Sacrifices for Stability. CONCLUSIONS: This study highlights the significance and impact of dual tasking on the lived experience of adults with multiple sclerosis, furthering the need to more fully examine this phenomenon and potentially improve fall-prevention interventions and facilitate community participation.

Application of Fuzzy Composite Programming in a Questionnaire as a Methodological Test to Study the Effect of Reservoir Management on Social Interests-A Survey Based on Two Case Studies in Southern Germany.

To understand the concerns, approvals and disapprovals of expert opinions about managerial issues from around reservoirs this study uses the approach of Fuzzy Composite Programming (FCP) in direct questionnaires to parameterize and rate a set of indicators with statements about managerial issues concerning societal implications by the responding experts. The personal ratings get summarized in four different layers and converted into one final numerical value which will be in the range of 0 as the absolute disapproval of the indicators and 1 as the absolute approval of the indicators. The FCP approach thereby rates the individual indicator, secondly the indicator category, thirdly the compensational factor and fourthly the dimensions of sustainability. This facilitates a rapid comparison of results of rather complicated sets of pre-set indicators in topics reaching from legal issues to societal concerns in one final numerical value to identify crucial topics and start open debates. This study was carried out as a methodological test at two water reservoirs in southern Germany. The results show a general possibility of using a rather retrospect methodology towards current ratings of experts in the field of reservoir management. 10 respondents answered the FCP questionnaires, 5 at each study site. The scores of the calculation showed a higher level of positive connection in the case of the Schwarzenbachtalsperre (SBT) with a score of 0.77, compared to a score of 0.54 in the case of the Franconian Lake District (FLD). Apart from the pure numerical scores, FCP can show conflicting issues and possible compromise solutions between the different stakeholders, in/based on the individual ratings. The findings could help reach a more sustainable management of water resources that includes all stakeholders, by pointing out debatable implications.

Have we failed them? Online learning self-efficacy of physiotherapy students during COVID-19 pandemic.

BACKGROUND & OBJECTIVE: The use of online learning systems during COVID-19 pandemic created concerns about students' ability to successfully navigate the online learning environment. This study aims to capture the experience and changes in self-efficacy of physiotherapy students in Jordan. METHODS: A mixed methods online survey was used. Physiotherapy entry-level students in public universities completed the online learning self-efficacy (OLSE) and the academic self-efficacy (ASE) scales. A free-entry text box was used to document the factors that augmented or reduced the perceived level of self-efficacy. RESULTS: A statistically significant decrease in OLSE (t = 6.043, p < 0.001) and in ASE (t = 3.960, p < 0.001) was identified. Four main qualitative themes were identified, namely: availability of time, resources and learning skills; social and psychological stress; educators' skills and access; and accepting the need for a change. CONCLUSION: Contrary to expectations, the findings indicated a decrease in self-efficacy. This has implications in light of the new direction to formalise online learning in Jordanian higher education institutes post COVID-19 pandemic. Training educators as well as students on best online learning practices could increase students' perceived efficacy.

Symptoms of Depression, Anxiety, and Posttraumatic Stress among Patients with Cardiac Pacemakers.

Despite being a prerequisite for tailoring specific therapeutic interventions, knowledge of pattern and prevalence of clinically significant psychiatric symptomatology among patients with cardiac pacemakers (PMs), especially of symptoms of posttraumatic stress, is limited. We studied symptoms of depression, anxiety, and posttraumatic stress among PM patients (PM due to syncope or presyncope) compared to participants of (i) a cardiac, (ii) a chronic disease, and (iii) a healthy control group. Symptoms of depression, anxiety and posttraumatic stress were measured by validated self-report scales at least 6 months after implantation of the PM (PM group; n = 38), percutaneous coronary intervention (PCI; PCI control group; n = 23), and first dialysis (Dialysis control group; n = 17). Blood donors constituted the Healthy control group (n = 42). Both PM, PCI, and dialysis patients reported depressive symptoms above clinical cut-off more frequently than the healthy controls (16.2, 26.1, 41.2, and 0%, respectively; p < 0.001). Self-report of symptoms of anxiety and posttraumatic stress did not differ significantly across study groups. However, a non-negligible proportion of PM patients reported on symptoms of posttraumatic stress of anticipated clinical relevance. Identification and treatment of depression deserves attention in clinical routine in all three patient populations. Further study of posttraumatic stress in PM patients seems advisable.

Forging Connections in Latin America to Advance AI in Radiology.

The 1° Encontro Latino-Americano de IA em Saúde (1st Latin American Meeting on AI in Health) was held during the 2022 Jornada Paulista de Radiologia, the annual radiology meeting in the state of São Paulo. The event was created to foster discussion among Latin American countries about the complexity, challenges, and opportunities in developing and using artificial intelligence (AI) in those countries. Technological improvements in AI have created high expectations in health care. AI is recognized increasingly as a game changer in clinical radiology. To counter the fear that AI would "take over" radiology, the program included activities to educate radiologists. The development of AI in Latin America is in its early days, and although there are some pioneer cases, many regions still lack world-class technological infrastructure and resources. Legislation, regulation, and public policies in data privacy and protection, digital health, and AI are recent advances in many countries. The meeting program was developed with a broad scope, with expertise from different countries, backgrounds, and specialties, with the objective of encompassing all levels of complexity (from basic concepts to advanced techniques), perspectives (clinical, technical, ethical, and business), and specialties (both informatics and data science experts and the usual radiology clinical groups). It was an opportunity to connect with peers from other countries and share lessons learned about AI in health care in different countries and contexts. Keywords: Informatics, Use of AI in Education, Impact of AI on Education, Social Implications © RSNA, 2022.

A mixed-methods protocol to develop and validate a stewardship maturity matrix for human genomic data in the cloud.

This article describes a mixed-methods protocol to develop and test the implementation of a stewardship maturity matrix (SMM) for repositories which govern access to human genomic data in the cloud. It is anticipated that the cloud will host most human genomic and related health datasets generated as part of publicly funded research in the coming years. However, repository managers lack practical tools for identifying what stewardship outcomes matter most to key stakeholders as well as how to track progress on their stewardship goals over time. In this article we describe a protocol that combines Delphi survey methods with SMM modeling first introduced in the earth and planetary sciences to develop a stewardship impact assessment tool for repositories that manage access to human genomic data. We discuss the strengths and limitations of this mixed-methods design and offer points to consider for wrangling both quantitative and qualitative data to enhance rigor and representativeness. We conclude with how the empirical methods bridged in this protocol have potential to improve evaluation of data stewardship systems and better align them with diverse stakeholder values in genomic data science.

Ethical, Legal, and Social Implications of Genomics in China: A Scoping Review and Implications for Precision Public Health.

We conducted a scoping review of Chinese language studies on the ethical, legal, and social implications of genomics and identified four broad themes: ethical considerations, regulatory framework, perceptions of genomics and precision medicine, and future directions of genomics. Ethical, legal, and social implications of genomics are growing in importance and are highly relevant to public health in China.