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1.
Alzheimers Dement ; 14(9): 1216-1231, 2018 09.
Article in English | MEDLINE | ID: mdl-29936147

ABSTRACT

Cognitive function is an important end point of treatments in dementia clinical trials. Measuring cognitive function by standardized tests, however, is biased toward highly constrained environments (such as hospitals) in selected samples. Patient-powered real-world evidence using information and communication technology devices, including environmental and wearable sensors, may help to overcome these limitations. This position paper describes current and novel information and communication technology devices and algorithms to monitor behavior and function in people with prodromal and manifest stages of dementia continuously, and discusses clinical, technological, ethical, regulatory, and user-centered requirements for collecting real-world evidence in future randomized controlled trials. Challenges of data safety, quality, and privacy and regulatory requirements need to be addressed by future smart sensor technologies. When these requirements are satisfied, these technologies will provide access to truly user relevant outcomes and broader cohorts of participants than currently sampled in clinical trials.


Subject(s)
Clinical Trials as Topic/instrumentation , Dementia , Information Technology , Clinical Trials as Topic/ethics , Clinical Trials as Topic/legislation & jurisprudence , Communication , Data Accuracy , Dementia/diagnosis , Dementia/therapy , Humans , Information Technology/ethics , Information Technology/legislation & jurisprudence , Privacy
2.
Sci Eng Ethics ; 24(3): 905-925, 2018 06.
Article in English | MEDLINE | ID: mdl-26797878

ABSTRACT

Even though public awareness about privacy risks in the Internet is increasing, in the evolution of the Internet to the Internet of Things (IoT) these risks are likely to become more relevant due to the large amount of data collected and processed by the "Things". The business drivers for exploring ways to monetize such data are one of the challenges identified in this paper for the protection of Privacy in the IoT. Beyond the protection of privacy, this paper highlights the need for new approaches, which grant a more active role to the users of the IoT and which address other potential issues such as the Digital Divide or safety risks. A key facet in ethical design is the transparency of the technology and services in how that technology handles data, as well as providing choice for the user. This paper presents a new approach for users' interaction with the IoT, which is based on the concept of Ethical Design implemented through a policy-based framework. In the proposed framework, users are provided with wider controls over personal data or the IoT services by selecting specific sets of policies, which can be tailored according to users' capabilities and to the contexts where they operate. The potential deployment of the framework in a typical IoT context is described with the identification of the main stakeholders and the processes that should be put in place.


Subject(s)
Community Participation , Computer Security , Data Collection/ethics , Information Technology/ethics , Informed Consent , Internet , Privacy , Data Collection/methods , Delivery of Health Care , Disclosure , Engineering/ethics , Ethics, Business , Humans , Morals , Personal Autonomy , Policy , Power, Psychological , Stakeholder Participation , Technology
3.
J Med Ethics ; 43(11): 741-743, 2017 11.
Article in English | MEDLINE | ID: mdl-28483804

ABSTRACT

As the recent inaugural Ethical, Legal, and Social Issues (ELSI) 2.0 conference made clear, the effects of information communication technology (ICT) are pervasive in biomedical research. Data initiatives are arising in all corners of biomedicine. Data sharing efforts already promised to surpass even the ambitious goals of the National Human Genome Research Institute, only 5 years after publication of its 10-year vision. ELSI research was established, in part, to address challenges of open data access and data sharing. However, by and large, ELSI research projects address particular concerns of a given population, jurisdiction, type of research practice or type of data. This does not necessarily facilitate coherent data policy for sustainable data stewardship. Forward-looking, data friendly strategies need to be considered. Orchestration strategies are needed which overcome barriers to collective action. Here we present challenges policymakers face, and suggest three basics steps towards meeting them. First, policymakers must recognise the systematic change that occurs when ICT enables dataflow itself to become an organising principle of biomedical research. Second, methods for identifying and gathering types of metadata suitable for ELSI research ought to be developed and regulated. Third, policymakers need to organise in ways that mirror the new vision for data-enabled research that data technologies are making possible, as ELSI 2.0 encourages researchers to do. Taking these steps will help ensure research evolves in ways that warrants trust of the public while still supporting widespread ethical access to necessary data, research subjects, samples and findings.


Subject(s)
Biomedical Research/ethics , Data Collection/ethics , Information Dissemination/ethics , Information Technology/ethics , Policy Making , Public Policy , Biomedical Research/legislation & jurisprudence , Data Collection/legislation & jurisprudence , Humans , Information Dissemination/legislation & jurisprudence , Information Technology/legislation & jurisprudence , Trust
4.
Med Arch ; 71(5): 351-355, 2017 Oct.
Article in English | MEDLINE | ID: mdl-29284905

ABSTRACT

INTRODUCTION: Advanced technology has increased the use of telemedicine and Information Technology (IT) in treating or rehabilitating diseases. An increased use of technology increases the importance of the ethical issues involved. The need for keeping patients' information confidential and secure, controlling a number of therapists' inefficiency as well as raising the quality of healthcare services necessitates adequate heed to ethical issues in telemedicine provision. AIM: The goal of this review is gathering all articles that are published through 5 years until now (2012-2017) for detecting ethical issues for providing telemedicine services and Information technology. The reason of this time is improvement of telemedicine and technology through these years. This article is important for clinical practice and also to world, because of knowing ethical issues in telemedicine and technology are always important factors for physician and health providers. MATERIAL AND METHODS: the required data in this research were derived from published electronic sources and credible academic articles published in such databases as PubMed, Scopus and Science Direct. The following key words were searched for in separation and combination: tele-health, telemedicine, ethical issues in telemedicine. A total of 503 articles were found. After excluding the duplicates (n= 93), the titles and abstracts of 410 articles were skimmed according to the inclusion criteria. Finally, 64 articles remained. They were reviewed in full text and 36 articles were excluded. At the end, 28 articles were chosen which met our eligibility criteria and were included in this study. RESULTS: Ethics has been of a great significance in IT and telemedicine especially the Internet since there are more chances provided for accessing information. It is, however, accompanied by a threat to patients' personal information. Therefore, suggestions are made to investigate ethics in technology, to offer standards and guidelines to therapists. Due to the advancement in technology, access to information has become simpler than the past. This has prompted hackers to seize the opportunity. DISCUSSION: This research shows that the ethical issues in telemedicine can be investigated from several aspects like technology, doctor-patient relationship, data confidentiality and security, informed consent, patient's and family's satisfaction with telemedicine services. Following ethical issues in telemedicine is a primary aspect of high quality services. In other words, if therapists abide by ethical rules, they can provide better services for patients. Attention to ethical issues in telemedicine guarantees a safer use of the services.


Subject(s)
Information Technology/ethics , Telemedicine/ethics , Computer Security , Confidentiality , Humans , Informed Consent , Physician-Patient Relations
5.
PLoS One ; 16(6): e0252773, 2021.
Article in English | MEDLINE | ID: mdl-34115778

ABSTRACT

The arguable claims of levels of trust in politics and business situations motivated this study, which investigates the degree of trust within micro, small, and medium categories of Hungarian Information and Communication Technology (ICT) companies. Different sizes of companies have varying interactions between internal members and their business partners. This study concentrated on exploring Hungarian ICT companies due to their significant role in supporting Industry 4.0. The study population are active Hungarian ICT companies. This research implemented random cluster selection related to the location of ICT firms. It exploited 100 samples, including micro, small, and medium-sized companies, and implemented discriminant analysis to examine the description and hypotheses. First, this study found that the level of trust in institutions within micro, small, and medium-sized companies varies significantly. The level of trust in institutions proliferates within corporations due to the capability of the formal institution to provide fair public services. This research additionally underlined that the performance of the Hungarian government would improve trust amongst the companies. Second, this study concluded that the level of interpersonal trust within three categories of companies was similar. A high level of interpersonal trust would expand internal engagement among the members of companies. Finally, the level of trust in business partners varied significantly within the distinct sizes of Hungarian ICT companies. A high level of trust in corporate associates improves business collaboration, reduces uncertainty, and supports long-term business connections. Levels of institutional trust and inter-organizational trust differed amongst different categories of companies. However, the level of interpersonal trust remained similar within companies of the various sizes.


Subject(s)
Information Technology/ethics , Trust , Humans , Hungary , Information Technology/classification , Information Technology/standards
6.
J Am Med Inform Assoc ; 25(8): 1099-1107, 2018 08 01.
Article in English | MEDLINE | ID: mdl-29767726

ABSTRACT

Objective: We describe current practices of ethics-related data governance in large neuro-ICT projects, identify gaps in current practice, and put forward recommendations on how to collaborate ethically in complex regulatory and normative contexts. Methods: We undertake a survey of published principles of data governance of large neuro-ICT projects. This grounds an approach to a normative analysis of current data governance approaches. Results: Several ethical issues are well covered in the data governance policies of neuro-ICT projects, notably data protection and attribution of work. Projects use a set of similar policies to ensure users behave appropriately. However, many ethical issues are not covered at all. Implementation and enforcement of policies remain vague. Conclusions: The data governance policies we investigated indicate that the neuro-ICT research community is currently close-knit and that shared assumptions are reflected in infrastructural aspects. This explains why many ethical issues are not explicitly included in data governance policies at present. With neuro-ICT research growing in scale, scope, and international involvement, these shared assumptions should be made explicit and reflected in data governance.


Subject(s)
Ethics, Research , Medical Informatics/ethics , Neurosciences/ethics , Computer Security/ethics , Humans , Information Technology/ethics
7.
Rev. Hosp. Clin. Univ. Chile ; 33(3): 234-241, 2022.
Article in Spanish | LILACS | ID: biblio-1417240

ABSTRACT

The paper proposes, as the topic of analysis, the emergence of telemedicine, a tool that has been intensively used by doctors and other professionals during the covid pandemic. The essay, divided into two parts, first describes the current situation of telemedicine and afterwards proposes a few precautionary theses, related to telemedicine and the doctor-patient relationship according to the undestanding that the latter has been inherited and transmitted by medical anthropology and the medical humanities. (AU)


Subject(s)
Humans , Physician-Patient Relations/ethics , Telemedicine/ethics , Information Technology/ethics
8.
J Empir Res Hum Res Ethics ; 12(5): 372-382, 2017 12.
Article in English | MEDLINE | ID: mdl-28831844

ABSTRACT

The parallel rise of pervasive data collection platforms and computational methods for collecting, analyzing, and drawing inferences from large quantities of user data has advanced social computing research, investigating digital traces to understand mediated behaviors of individuals, groups, and societies. At the same time, methods employed to access these data have raised questions about ethical research practices. This article provides insights into U.S. institutional review boards' (IRBs) attitudes and practices regulating social computing research. Through descriptive and inferential analysis of survey data from staff at 59 IRBs at research universities, we examine how IRBs evaluate the growing variety of studies using pervasive digital data. Findings unpack the difficulties IRB staff face evaluating increasingly technical research proposals while highlighting the belief in their ability to surmount these difficulties. They also indicate a lack of consensus among IRB staff about what should be reviewed and a willingness to work closely with researchers.


Subject(s)
Attitude , Behavioral Research/ethics , Data Collection/ethics , Ethical Review , Ethics Committees, Research , Information Technology/ethics , Social Media , Behavioral Research/legislation & jurisprudence , Data Collection/methods , Ethical Analysis , Ethics, Research , Humans , Research Design , Research Personnel , Social Control, Formal , Surveys and Questionnaires , Technology , United States , Universities
10.
Article in Spanish | LILACS, COLNAL | ID: biblio-914646

ABSTRACT

Los objetivos de este trabajo fueron determinar la prevalencia del ciberbullying entre los participantes del es tudio, así como conocer el impacto psicológico tanto en cibervíctimas como en ciberagresores, analizando además las diferencias de género de dicho impacto. La muestra estuvo constituida por 639 estudiantes de la Universidad Pontificia Bolivariana, seccional Bucaramanga, con una media de edad de 17,6 años (chicos N = 303, chicas N = 334). Para ello se emplearon los siguientes instrumentos: (a) Escala de ciberagresiones; (b) Escala de cibervictimización; y (c) Symptom Assessment-45 Questionnaire (SA-45). Los resultados evidencian que un 27,5% de la muestra ha sido agredida en alguna ocasión, así como que 26,7% ha sido acosador durante el último año. Por otro lado, los resultados demostraron que existe un impacto psicológico (escalas del SA-45) tanto en las cibervíctimas, como en los ciberagresores. Respecto a las diferencias de género en ciberbullying se evidenciaron solo en algunas escalas (primordialmente depresión, ansiedad, sensibilidad interpersonal y somatización), aunque no fueron significativas entre los síntomas psicológicos reportados en este estudio (salvo en las escalas relacionadas con Somatización y Ansiedad fóbica)


The objectives of this study were to determine the prevalence of cyberbullying among study participants and examine the psychological impact on both cyber victims and cyber attackers, also analyzing gender differences in the impact. The sample consisted of 639 students from the Universidad Pontificia Bolivariana, Bucaramanga branch, with an average age of 17.66 years (N = 303 boys, girls N = 334). For developing this analysis, the following instruments were used: (a) Scale cyber aggressions; (B) Scale cyber victimization; and (c) Symptom Assessment Questionnaire-45 (SA-45). The results show that 27.5% of the sample has been attacked on occasion, and that the stalker was 26.7% over the past year. On the other hand, the results showed that there is a psychological impact (SA45 scales) in both cyber victims and cyber aggressors. Gender differences in cyberbullying were evident only at some scales (primarily depression, anxiety, interpersonal sensitivity and somatization), although they were not significant among the psychological symptoms reported in this study (except for scales related to Somatization and Phobic Anxiety).


Subject(s)
Humans , Bullying , Information Technology/ethics , Psychology, Adolescent , Students/psychology
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