The purpose of this study was to identify how older Korean people seek information and their desire to participate in decision making about their health care. A total of 165 elderly people living in Seoul, South Korea, participated in the study. Data were collected during individual interviews using the Autonomy Preference Index. The mean information-seeking score was high. The mean score for their desire to participate with a physician in decision making was lower, but this was higher when family members (...) were involved. The study indicates that many older people want to receive information about their health care. Families (or guardians), as well as older people themselves, should be included in the decision-making process. Nurses can encourage older people to express their wishes, while treating each individual with respect. (shrink)

Decades of public investment in molecular technologies and data integration techniques have fueled promises of precision medicine (PM) as a novel, targeted, and data-driven approach that takes into...

The potential of ChatGPT looms large for the practice of medicine, as both boon and bane. The use of Large Language Models (LLMs) in platforms such as ChatGPT raises critical ethical questions of w...

New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, these platforms facilitate new kinds of interactions, challenge longstanding understandings of privacy and consent, and raise fundamental questions about how the translational patient pathway should be organised.This editorial introduces the cross-journal article collection "Translation in healthcare: ethical, legal, and social implications", briefly outlining the genesis of the (...) collection in the 2015 Translation in healthcare conference in Oxford, UK and providing an introduction to the contemporary ethical challenges of translational research in biology and medicine accompanied by a summary of the papers included in this collection. (shrink)

The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information (PGI) direct-to-consumers. Companies such as 23andme (Mountain View, CA) and Navigenics (Foster City, CA) are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking (...) business ventures that market the science of the personal genome illustrates the new trend in collaborative science. In addition to fostering a consumer empowerment movement, it promotes the trend of democratizing information—openly sharing of data with all interested parties, not just the biomedical researcher—for the purposes of pooling data (increasing statistical power) and escalating the innovation process. This target article discusses the need for new approaches to studying DTC genomics using social network analysis to identify the impact of obtaining, sharing, and using PGI. As a locus of biosociality, DTC personal genomics forges social relationships based on beliefs of common genetic susceptibility that links risk, disease, and group identity. Ethical issues related to the reframing of DTC personal genomic consumers as advocates and research subjects and the creation of new social formations around health research may be identified through social network analysis. (shrink)

The combination of decreased genotyping costs and prolific social media use is fueling a personal genetic testing industry in which consumers purchase and interact with genetic risk information online. Consumers and their genetic risk profiles are protected in some respects by the 2008 federal Genetic Information Nondiscrimination Act (GINA), which forbids the discriminatory use of genetic information by employers and health insurers; however, practical and technical limitations undermine its enforceability, given the everyday practices of online social networking and its impact (...) on the workplace. In the Web 2.0 era, employers in most states can legally search about job candidates and employees online, probing social networking sites for personal information that might bear on hiring and employment decisions. We examine GINA's protections for online sharing of genetic information as well as its limitations, and propose policy recommendations to address current gaps that leave employees? genetic information vulnerable in a Web-based world. (shrink)

Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improv...

The rise of genomic technologies has catalyzed shifts in the health care landscape through the commercialization of genome sequencing and testing services in the genomics marketplace. The development of consumer genomics into a growing array of information technologies aimed at collecting, curating, and broadly sharing personal data and biological materials reconstitutes the meaning of health and reframes patients into biocitizens. In this context, the good biocitizen is expected to assume personal responsibility for health through consumption of genomic information and acquiescence (...) to public and private efforts at data surveillance and aggregation. These shifts raise fundamental questions about how competing interests of the public, the state, and corporate entities will be reconciled and what trade‐offs are demanded for the promise of precision health. (shrink)

Attending cram school has long been a trend in ethnic Chinese culture areas, including Taiwan. Despite the fact that school reform policies have been implemented in Taiwan, cram schools have continued to prosper. Therefore, in this educational culture, how to achieve a good educational effect is also a topic worthy of discussion. However, whether students really engage in those tutoring programs provided by cram schools has seldom been studied. To address this gap, this study explored how parents’ hovering attitude toward (...) life and coursework influences their children’s engagement in cram schools. This study targeted those students who attend English cram schools to test the correlates between two types of helicopter parenting, tutoring engagement and continued attendance at cram schools. A total of 320 questionnaires were sent out, and 300 were returned, giving an overall response rate of 93.75%. Excluding seven incomplete or invalid questionnaires, 293 valid questionnaires were received. The results of this study show that hovering behavior awareness is negatively related to cram school engagement, whereas cram school engagement is positively related to the intention to continue attending cram school. Moreover, the results imply that parents should alleviate their helicoptering behavior to enhance their children’s engagement in cram school tutoring programs. (shrink)

This study empirically analyzes how corporate social responsibility performance feedback impacts CSR performance, focusing on the performance feedback perspective of behavioral theory of the firm. By performing generalized least squares regression analysis based on Korean company data from 2012 to 2019, we presented evidence that positive social and historical performance feedback had a positive effect on CSR performance. Our results provide evidence that firms with higher social and historical CSR performance than CSR aspiration may have higher CSR performance than those (...) that do not. (shrink)

This study aims to contribute to the understanding of business news coverage of corporate social responsibility within a comparative international context by investigating two business newspapers, The Wall Street Journal from the United States and The Financial Times from the United Kingdom. Drawing on the news framing research and the implicit and explicit CSR framework of Matten and Moon, this content analysis shows that business news coverage of CSR in the United States and in the United Kingdom differs in terms (...) of news framing, motive attributions of CSR as a concept, motive attributions of referenced companies in relation to CSR, general tone toward the concept of CSR, and the general tone toward referenced companies in relation to CSR. Most significantly, findings suggest that business news plays different roles in constructing and legitimizing CSR in the two countries. In the United States, CSR’s legitimacy and its conceptual positivity may be more implied through the coverage of singular events or actors, whereas in the United Kingdom, CSR’s illegitimacy and its conceptual negativity may be more exposed for further discussion through the coverage of larger societal contexts. Other theoretical as well as practical implications are also discussed. (shrink)

From the perspective of the system of systems development, system-level functional testing is required for designing subsystems. This study utilizes modeling and simulation techniques to analyze the operational behaviors of the subsystems and confirm data communication between them. The targeted system in the study is a naval combat system, which is a typical type of defense cyber-physical system. Three types of models were designed for the simulation testing of the NCS: a combat-management model for simulating the overall computational activities, physical (...) models to confirm the intrasubsystem behaviors, and data integration models to test the intersubsystem communications. These models are realized with the Model-View-ViewModel design pattern, which strongly facilitates graphical user interfaces being decoupled from model logic and data. We consider underwater combat scenarios as an application. Six significant physical subsystems within the NCS are simulated and tested: a ship-steering system, an inertial navigation system, a global navigation satellite system, a periscope, sonar systems, and a plotting board. We expect that the proposed work will play a principal role when analyzing the behaviors and communications of defense CPSs and providing an environment for functional testing as a digital twin. (shrink)

The American Journal of Bioethics, Volume 12, Issue 4, Page 41-43, April 2012.

Disability has been perceived as a social conditioning phenomenon and a sign system marking the body and mind. Accordingly, photographs of disability could shape our cultural perceptions about disability and disabled persons. In response to this position, we engage in a critical semiotic inquiry into press photographs of disability from The Star, a Malaysian mainstream English newspaper. We adapted Van Leeuwen’s social and visual actor networks to understand the visual techniques employed in depicting disabled actors in these images. The depiction (...) is examined in relation to their absence and/or presence in these published photographs. If absent, the inclusion of non-disabled is analyzed. When present, the social categorizations of roles, grouping and specific/generic depictions are investigated. Findings reveal disabled persons have been symbolically excluded and thus, socially othered. These exclusionary strategies imply disabling journalistic practices which should be cautioned as they could could potentially undermine the advocacy for an inclusive society. (shrink)

The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information direct-to-consumers. Companies such as 23andme and Navigenics are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking business ventures that market the science of (...) the personal genome illustrates the new trend in collaborative science. In addition to fostering a consumer empowerment movement, it promotes the trend of democratizing information—openly sharing of data with all interested parties, not just the biomedical researcher—for the purposes of pooling data and escalating the innovation process. This target article discusses the need for new approaches to studying DTC genomics using social network analysis to identify the impact of obtaining, sharing, and using PGI. As a locus of biosociality, DTC personal genomics forges social relationships based on beliefs of common genetic susceptibility that links risk, disease, and group identity. Ethical issues related to the reframing of DTC personal genomic consumers as advocates and research subjects and the creation of new social formations around health research may be identified through social network analysis. (shrink)

The slandering of a firm’s products by competing firms poses significant threats to the victim firm, with the resulting damage often being as harmful as that from product-harm crises. In contrast to a true product-harm crisis, however, this disparagement is based on a false claim or fake news; thus, we call it a pseudo-product-harm crisis. Using a pseudo-product-harm crisis event that involved two competing firms, this research examines how consumer sentiments about the two firms evolved in response to the crisis. (...) Our analyses show that while both firms suffered, the damage to the offending firm was more detrimental, in terms of advertising effectiveness and negative news publicity, than that to the victim firm. Our study indicates that, even apart from ethical concerns, the false claim about the victim firm was not an effective business strategy to increase the offending firm’s performance. (shrink)

ELSI efforts long have been troubled by critiques that they privilege scientific frameworks and grant scientists the power to set ethical agendas. As the first director of the Human Genome Project’...

PurposeThis study aims to describe the adverse events following immunization of SARS-CoV-2 vaccination in cancer patients/survivors associated with their psychological distress.MethodsA cross-sectional study was conducted to assess AEFIs after the receipt of SARS-CoV-2 vaccines in cancer patients/survivors attending a university hospital in Malaysia. Psychological distress was measured using the Hospital Anxiety and Depression Scale before and after the first and second doses of COVID-19 vaccine.ResultsA total of 217 complete responses were received. Compared with before vaccination, both HADS Anxiety and HADS (...) Depression scores were significantly reduced after the first and second dose of the SARS-CoV-2 vaccine. Most of the participants had mild-or-moderate systemic and local AEFIs, with the most common being pain at the injection site, tiredness, and headache for both the first and second doses of the vaccine. Positive correlations between the total AEFI score and HADS-A and HADS-D scores were observed after the first dose of the SARS-CoV-2 vaccine. Similarly, positive associations were observed between the total AEFI score and HADS-A and HADS-D scores after the second dose of the SARS-CoV-2 vaccine.ConclusionMild-to-moderate AEFIs found in this study help address vaccine hesitancy in cancer patients/survivors. Receiving the SARS-CoV-2 vaccine had a positive effect on decreasing psychological distress in cancer patients/survivors. High severity of an AEFI was associated with higher anxiety and depressive symptoms. (shrink)

Background Conventional consent practices face ethical challenges in continuously evolving digital health environments due to their static, one-time nature. Dynamic consent offers a promising solution, providing adaptability and flexibility to address these ethical concerns. However, due to the immaturity of the concept and accompanying technology, dynamic consent has not yet been widely used in practice. This study aims to identify the facilitators of and barriers to adopting dynamic consent in real-world scenarios. Methods This scoping review, conducted in December 2022, adhered (...) to the PRISMA Extension for Scoping Reviews guidelines, focusing on dynamic consent within the health domain. A comprehensive search across Web of Science, PubMed, and Scopus yielded 22 selected articles based on predefined inclusion and exclusion criteria. Results The facilitators for the adoption of dynamic consent in digital health ecosystems were the provision of multiple consent modalities, personalized alternatives, continuous communication, and the dissemination of up-to-date information. Nevertheless, several barriers, such as consent fatigue, the digital divide, complexities in system implementation, and privacy and security concerns, needed to be addressed. This study also investigated current technological advancements and suggested considerations for further research aimed at resolving the remaining challenges surrounding dynamic consent. Conclusions Dynamic consent emerges as an ethically advantageous method for digital health ecosystems, driven by its adaptability and support for continuous, two-way communication between data subjects and consumers. Ethical implementation in real-world settings requires the development of a robust technical framework capable of accommodating the diverse needs of stakeholders, thereby ensuring ethical integrity and data privacy in the evolving digital health landscape. (shrink)