scholarly journals Views on genomic research result delivery methods and informed consent: a review

2021 ◽  
Author(s):  
Danya F Vears ◽  
Joel T Minion ◽  
Stephanie J Roberts ◽  
James Cummings ◽  
Mavis Machirori ◽  
...  
Keyword(s):  
Informed Consent ◽  
Research Result ◽  
Genomic Research ◽  
Return Of Results ◽  
Empirical Literature ◽  
Delivery Methods ◽  
Web Based ◽  
Face To Face ◽  
The Public ◽  
Stakeholder Perspectives

There has been little discussion of the way genomic research results should be returned and how to obtain informed consent for this. We systematically searched the empirical literature, identifying 63 articles exploring stakeholder perspectives on processes for obtaining informed consent about return of results and/or result delivery. Participants, patients and members of the public generally felt they should choose which results are returned to them and how, ranging from direct (face-to-face, telephone) to indirect (letters, emails, web-based delivery) communication. Professionals identified inadequacies in result delivery processes in the research context. Our findings have important implications for ensuring participants are supported in deciding which results they wish to receive or, if no choice is offered, preparing them for potential research outcomes.

WeBCEIS - A Scenario for Integrating Web-Based Education into Classical Education

2011 ◽  
pp. 398-414
Author(s):  
Muge Klein ◽  
Daniel Sommer ◽  
Wolffried Stucky
Keyword(s):  
Blended Learning ◽  
Teaching And Learning ◽  
University Education ◽  
Traditional Classrooms ◽  
Delivery Methods ◽  
Web Based ◽  
Trade Off ◽  
Classical Education ◽  
Face To Face ◽  
Web Based Education

Web-based education implies many advantages for teachers and learners, such as independence of time and place, personalization, and interactivity, but an important factor in learning, namely, face-to-face communication in traditional classrooms, cannot be adequately emulated. Students in a classical university education would lose many important social interactions in a purely Web-based education scenario, which would have important repercussions on their university education. The trade-off is a “blended learning” scenario, which is the integration of assorted learning delivery methods to benefit from both education scenarios. We are, therefore, arguing for an integration of Web-based and classical education, and present WebCEIS— our blended learning scenario for integrating Web-based education into classical education—looking at the organizational and the technological aspects of teaching and learning, and present our strategy for the implementation of WebCEIS.

scholarly journals Being a good spy: Legitimizing access to web-based observation

2015 ◽  
Vol 9 (2) ◽  
pp. 19 ◽  
Author(s):  
Ingeborg Grønning
Keyword(s):  
Informed Consent ◽  
Methodological Approach ◽  
Ethical Standards ◽  
Online Forums ◽  
Ethical Guidelines ◽  
High Quality ◽  
High Quality Research ◽  
Web Based ◽  
Complex Issue ◽  
The Public

<p>Observation of online forums is a relevant methodological approach for researchers in several disciplines. However, ethical guidelines on such observations challenge the ethically concerned researcher. In this paper, I reflect on how I carried out my observation of an online weight-loss forum, and how I could have conducted it differently to meet ethical standards and the demands of high-quality research. After receiving approval from the forum administrators to observe the forum, information about my project on obesity was posted online. Some of the participants reacted negatively to my presence in the forum. This paper draws on the evolving discussion between researcher and participants on the complex issue of research ethics, particularly informed consent, in studying closed forums on the Internet. It is suggested that evaluating whether participants are harmed is more important than the public/private divide when considering whether informed consent is necessary.</p>

scholarly journals EVALUATION OF PLANNING AND MANAGEMENT OF DISTANCE EDUCATION. ACRITICAL LITERATURE REVIEW

2021 ◽  
Vol 1 (1) ◽  
pp. 14-28
Author(s):  
Cassan Kimani
Keyword(s):  
Distance Education ◽  
Empirical Literature ◽  
Access To Higher Education ◽  
Web Based ◽  
Face To Face ◽  
Planning And Management ◽  
Frequent Use ◽  
Bulletin Boards ◽  
Education Today ◽  
Distance Courses

Purpose: The rapid technological changes in education today have become paramount towards meeting our educational demands for the 21st century. The emerging trend in the use of Information Communication Technology has helped in bringing down the traditional barriers of access to higher education leading to access of quality education and training. This has provided learners with opportunities for lifelong learning and meaningful participation in the world of work and society as productive citizens through distance learning. The general objective of the study was to conduct an evaluation of planning and management of distance education. Methodology: The paper used a desk study review methodology where relevant empirical literature was reviewed to identify main themes and to extract knowledge gaps. Findings: From the study findings, it is concluded that little difference was found in the community found in the web-based course in comparison with their traditional courses. With the special characteristics associated with distance education, special measures should be taken to see that communities are established. Choosing exercises or activities that are collaborative will increase the potential for developing a community of learners. In addition, frequent use of online discussion or bulletin boards will also assist with this endeavor. Professional development on how to build a community for traditional and web-based courses is needed. Recommendations: The study recommends that is a need for assessment of whether or not faculty are adequately prepared to teach at a distance, especially in light of the fact that faculty tend to teach in the same manner in which they were taught, is definitely warranted. A check list that would help identify the preparedness of the faculty member before they are responsible for distance student learning would help the students and program. Instructor training should be required before faculty are considered qualified to teach distance courses which necessitates the discovery of quality training programs. Support staff that is needed to assist faculty members when making the transition from a face-to-face to a virtual environment should be identified

scholarly journals Return of individual research results from genomic research: A systematic review of stakeholder perspectives

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0258646
Author(s):  
Danya F. Vears ◽  
Joel T. Minion ◽  
Stephanie J. Roberts ◽  
James Cummings ◽  
Mavis Machirori ◽  
...  
Keyword(s):  
Empirical Studies ◽  
Genomic Research ◽  
Empirical Literature ◽  
Research Results ◽  
Research Participants ◽  
Stakeholder Perspectives ◽  
Overwhelming Evidence ◽  
The Usa ◽  
Psychological Harm ◽  
Individual Research Results

Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders’ perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.

Exception from informed consent for emergency research: The experience of the public access defibrillation trial

2002 ◽  
Author(s):  
Vincent N. Mosseso ◽  
◽  
Lawrence H. Brown ◽  
Shannon W. Stephens ◽  
Tom P. Aufderheide ◽  
...  
Keyword(s):  
Informed Consent ◽  
Public Access ◽  
Emergency Research ◽  
The Public ◽  
Public Access Defibrillation

Agents of Practice at the Public Library’s Reference Desk

2013 ◽  
Author(s):  
Mary Cavanagh
Keyword(s):  
Public Libraries ◽  
Face To Face ◽  
Professional Boundaries ◽  
The Public ◽  
Reference Librarians ◽  
Practice Perspective ◽  
The Face ◽  
Reference Et

The face to face interactions of reference librarians and reference assistants are studied from a theoretical practice perspective. Rather than reinforcing professional boundaries, the results of this analysis support reference practice in public libraries as a highly relational activity where reference “expertise” retains a significant subjectivist, relational dimension.Les interventions en personne des bibliothèques de référence et des adjoints à la référence sont étudiées du point de vue de la pratique théorique. Plutôt que de renforcer les frontières interprofessionnelles, les résultats de cette analyse appuient l'idée que les pratiques de référence en milieu public sont des activités hautement relationnelles où l'expertise de la référence conserve une dimension subjectiviste et relationnelle. 

DESIGN AND DEVELOPMENT OF POPULATION SERVICE ADMINISTRATION SYSTEM WITH PIECES METHOD IN KEMIRI VILLAGE HEAD OFFICE BANTEN

2019 ◽  
Vol 1 (1) ◽  
pp. 33-45
Author(s):  
Rosdiana Rosdiana ◽  
Padeli Padeli ◽  
Revi Sajidah Sri Handayani ◽  
Rifky Alfian
Keyword(s):  
Human Error ◽  
Unified Modeling Language ◽  
Integrated System ◽  
Web Based ◽  
Administration System ◽  
Unified Modeling ◽  
The Public ◽  
File Storage ◽  
The Government ◽  
The Village

The public service administration system at the government offices of the Kemiri village office in the Kemiri District currently does not have a computerized and integrated system. Because the system runs, residents who submit letters for administrative completeness, still use the Ms.Word / Ms.Excel application. of course has many weaknesses including human error, not neat in file storage, resulting in the lengthy process of searching and making a cover letter and required reports. The analytical method used in this study is to use PIECES (Performance, Informance, Economy, Control, Efficiency, Service) analysis, the design of the model uses UML (Unified Modeling Language). The results of this study are web-based letter information systems at the Office of the Village Chief of Kemiri that can accessed using a local computer browser. Thus the information letter needed by the Kemiri Village community and more effective and efficient in making the letter.

scholarly journals The Effect of Knowledge, Promotion, and Religiosity on Intention to Use Islamic Banking Services

2020 ◽  
Vol 11 (2) ◽  
pp. 128
Author(s):  
Kardoyo . ◽  
Ahmad Nurkhin ◽  
Muhsin . ◽  
Hasan Mukhibad ◽  
Fatmala Dewi Aprilia
Keyword(s):  
Significant Influence ◽  
Research Result ◽  
Educational Background ◽  
Islamic Banking ◽  
Islamic Banks ◽  
Banking Services ◽  
The Public ◽  
Central Java ◽  
And Gender ◽  
Knowledge Promotion

This study aims to examine the effect of knowledge, promotion, and religiosity on the interest in using Islamic banking services. The purpose of the next research is to examine the effect of knowledge on religiosity. In addition, this study also examines the effect of educational background and age on saving interest in Islamic banks. The population in this study are customers of Bank Syariah Mandiri, Brebes, Central Java, Indonesia. Ninety-nine research samples were obtained. The data collection method used was questionnaires. The data analysis method used was SEM-PLS. The results showed that only promotion proved to have a positive and significant effect on interest in using the services of Islamic banks. Knowledge and religiosity have not been proven to have a significant effect on interest in using services of Islamic banks. Likewise, background and gender do not have a significant effect. The next research result is that there is a positive and significant influence of knowledge on religiosity; there is also a positive and significant influence on the promotion of knowledge. This study recommends the importance of continuing socialization and education from Islamic banking stakeholders in Indonesia to continue introducing Islamic banks to the public.

scholarly journals ‘CTRL’: an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research

2021 ◽  
Author(s):  
Matilda A. Haas ◽  
Harriet Teare ◽  
Megan Prictor ◽  
Gabi Ceregra ◽  
Miranda E. Vidgen ◽  
...  
Keyword(s):  
Large Scale ◽  
Genomic Medicine ◽  
International Standards ◽  
Security And Privacy ◽  
Genomic Research ◽  
Return Of Results ◽  
Future Research ◽  
Design And Development ◽  
Participant Engagement ◽  
Dynamic Consent

AbstractThe complexities of the informed consent process for participating in research in genomic medicine are well-documented. Inspired by the potential for Dynamic Consent to increase participant choice and autonomy in decision-making, as well as the opportunities for ongoing participant engagement it affords, we wanted to trial Dynamic Consent and to do so developed our own web-based application (web app) called CTRL (control). This paper documents the design and development of CTRL, for use in the Australian Genomics study: a health services research project building evidence to inform the integration of genomic medicine into mainstream healthcare. Australian Genomics brought together a multi-disciplinary team to develop CTRL. The design and development process considered user experience; security and privacy; the application of international standards in data sharing; IT, operational and ethical issues. The CTRL tool is now being offered to participants in the study, who can use CTRL to keep personal and contact details up to date; make consent choices (including indicate preferences for return of results and future research use of biological samples, genomic and health data); follow their progress through the study; complete surveys, contact the researchers and access study news and information. While there are remaining challenges to implementing Dynamic Consent in genomic research, this study demonstrates the feasibility of building such a tool, and its ongoing use will provide evidence about the value of Dynamic Consent in large-scale genomic research programs.

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