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.

scholarly journals Genomic medicine implementation protocols in the PhenX Toolkit: tools for standardized data collection

2021 ◽  
Author(s):  
Wendy K. Chung ◽  
Kyle Brothers ◽  
Angela Bradbury ◽  
Sirisak Chanprasert ◽  
Lori Orlando ◽  
...  
Keyword(s):  
Data Collection ◽  
Working Group ◽  
Social Issues ◽  
Genomic Medicine ◽  
Steering Committee ◽  
Genomic Research ◽  
Return Of Results ◽  
Standard Data ◽  
New Research ◽  
Research Domain

Abstract Purpose The PhenX Toolkit (www.phenxtoolkit.org), an online catalog of recommended measurement protocols, facilitates cross-study analyses for research with human participants. The PhenX Steering Committee recommended genomic medicine implementation as a new research domain, with the following scope: genomic knowledge and education (both patients and providers); implementation science; changes in management and treatment; return of results; patient outcomes; and ethical, legal, and social issues (ELSI) associated with genomic research. Methods A seven-member expert Working Group convened in October 2019 to identify well-established measurement protocols for a new genomic medicine implementation domain and used the established PhenX consensus process to select measurement protocols for inclusion in the PhenX Toolkit. Results The Working Group recommended 15 measurement protocols for inclusion in the PhenX Toolkit, with priority given to those with empirical evidence supporting validity. Consortia funded by the National Institutes of Health, and particularly the National Human Genome Research Institute, proved critical in identifying protocols with established utility in this research domain, and identified protocols that were developed through a rigorous process for scope elements that lacked formally validated protocols. Conclusion Use of these protocols, which were released in September 2020, can facilitate standard data collection for genomic medicine implementation research.

Public Health Genomics, Biobanking, and Ethics

2019 ◽  
pp. 663-677
Author(s):  
Karen M. Meagher ◽  
R. Jean Cadigan ◽  
Gail E. Henderson ◽  
Eric Juengst
Keyword(s):  
Public Health ◽  
Health Care Quality ◽  
Large Scale ◽  
Population Based ◽  
Care Quality ◽  
Health Interventions ◽  
Genomic Research ◽  
Return Of Results ◽  
Public Health Genomics ◽  
Health Care Quality Improvement

As large-scale biobanks are developed for translational genomic research and health care quality improvement, they are also becoming attractive as sites for public health interventions, such as population-based preventive sequencing for actionable variants. With the rapid advance of next-generation sequencing, the feasibility of such population health interventions is also increasing. The resulting confluence of public health norms, fiduciary clinical obligations, and ethical expectations for research creates a number of challenges. This chapter on public health genomics examines three examples of projects facing such challenges, in order to anticipate the ethical and policy issues that public health uses of research biobanks raise for those responsible for their design and governance. The chapter looks at issues of informed consent, return of results, and community engagement.

scholarly journals A Comprehensive Survey on Exiting Solution Approaches towards Security and Privacy Requirements of IoT

2018 ◽  
Vol 8 (4) ◽  
pp. 2319 ◽  
Author(s):  
Rajani Chetan ◽  
Ramesh Shahabadkar
Keyword(s):  
Large Scale ◽  
Network Connectivity ◽  
Security And Privacy ◽  
Global Network ◽  
Future Research ◽  
Computing Systems ◽  
Research Track ◽  
Research Problems ◽  
Comprehensive Survey ◽  
Cloud Applications

<em>‘Internet of Things (IoT)’</em>emerged as an intelligent collaborative computation and communication between a set of objects capable of providing on-demand services to other objects anytime anywhere. A large-scale deployment of data-driven cloud applications as well as automated physical things such as embed electronics, software, sensors and network connectivity enables a joint ubiquitous and pervasive internet-based computing systems well capable of interacting with each other in an IoT. IoT, a well-known term and a growing trend in IT arena certainly bring a highly connected global network structure providing a lot of beneficial aspects to a user regarding business productivity, lifestyle improvement, government efficiency, etc. It also generates enormous heterogeneous and homogeneous data needed to be analyzed properly to get insight into valuable information. However, adoption of this new reality (i.e., IoT) by integrating it with the internet invites a certain challenges from security and privacy perspective. At present, a much effort has been put towards strengthening the security system in IoT still not yet found optimal solutions towards current security flaws. Therefore, the prime aim of this study is to investigate the qualitative aspects of the conventional security solution approaches in IoT. It also extracts some open research problems that could affect the future research track of IoT arena.

Change of Attitude, Technology and Practice: Identifying the Change for Increased Value Creation with Customer Co-creation

2017 ◽  
Vol 5 (1) ◽  
pp. 70-82
Author(s):  
Soumi Paul ◽  
Paola Peretti ◽  
Saroj Kumar Datta
Keyword(s):  
Social Media ◽  
New Product Development ◽  
Value Creation ◽  
Large Scale ◽  
Customer Orientation ◽  
Customer Relationships ◽  
Future Research ◽  
Management Competencies ◽  
Business Decisions ◽  
Prime Concern

Building customer relationships and customer equity is the prime concern in today’s business decisions. The emergence of internet, especially social media like Facebook and Twitter, changed traditional marketing thought to a great extent. The importance of customer orientation is reflected in the axiom, “The customer is the king”. A good number of organizations are engaging customers in their new product development activities via social media platforms. Co-creation, a new perspective in which customers are active co-creators of the products they buy and use, is currently challenging the traditional paradigm. The concept of co-creation involving the customer’s knowledge, creativity and judgment to generate value is considered not only an upcoming trend that introduces new products or services but also fitting their need and increasing value for money. Knowledge and innovation are inseparable. Knowledge management competencies and capacities are essential to any organization that aspires to be distinguished and innovative. The present work is an attempt to identify the change in value creation procedure along with one area of business, where co-creation can return significant dividends. It is on extending the brand or brand category through brand extension or line extension. This article, through an in depth literature review analysis, identifies the changes in every perspective of this paradigm shift and it presents a conceptual model of company-customer-brand-based co-creation activity via social media. The main objective is offering an agenda for future research of this emerging trend and ensuring the way to move from theory to practice. The paper acts as a proposal; it allows the organization to go for this change in a large scale and obtain early feedback on the idea presented. 

TO THE QUESTION OF RESPONSIBILITY FOR TORTURE IN THE RUSSIAN FEDERATION

2020 ◽  
Vol 10 (2) ◽  
pp. 103-106
Author(s):  
ASTEMIR ZHURTOV ◽  
Keyword(s):  
Human Rights ◽  
Russian Federation ◽  
Large Scale ◽  
Human Life ◽  
International Standards ◽  
World Community ◽  
The World ◽  
Long Time ◽  
Protection Of Human Rights ◽  
The Russian Federation

Cruel and inhumane acts that harm human life and health, as well as humiliate the dignity, are prohibited in most countries of the world, and Russia is no exception in this issue. The article presents an analysis of the institution of responsibility for torture in the Russian Federation. The author comes to the conclusion that the current criminal law of Russia superficially and fragmentally regulates liability for torture, in connection with which the author formulated the proposals to define such act as an independent crime. In the frame of modern globalization, the world community pays special attention to the protection of human rights, in connection with which large-scale international standards have been created a long time ago. The Universal Declaration of Human Rights and other international acts enshrine prohibitions of cruel and inhumane acts that harm human life and health, as well as degrade the dignity.Considering the historical experience of the past, these standards focus on the prohibition of any kind of torture, regardless of the purpose of their implementation.

Website Information Security and Privacy Concerns in 4IR: The Moderating Role of Trust in B2C e-Commerce

10.29007/jlq6 ◽  
2019 ◽  
Author(s):  
Thabang Mofokeng
Keyword(s):  
South Africa ◽  
Customer Satisfaction ◽  
Customer Loyalty ◽  
Success Factors ◽  
Industrial Revolution ◽  
Emerging Market ◽  
Security And Privacy ◽  
Future Research ◽  
Privacy And Security ◽  
Customer Trust

The technology devices introduced in recent years are not only vulnerable to Internet risks but are also unable to elevate the growth of B2C e-commerce. These concerns are particularly relevant today, as the world transitions into the Fourth Industrial Revolution. To date, existing research has largely focused on obstacles to customer loyalty. Studies have tested e-commerce models guided by the establishment of trusting, satisfied and loyal consumers in various international contexts. In South Africa, however, as an emerging market, there has been limited research on the success factors of online shopping.This study examines the influence of security and privacy on trust, seen as a moderator of customer satisfaction, which in turn, has an effect on loyalty towards websites. Based on an exhaustive review of literature, a conceptual model is proposed on the relationships between security and privacy on the one hand, and customer trust, satisfaction and loyalty on the other. A total of 250 structured, self-administered questionnaires was distributed to a purposively selected sample of respondents using face-to-face surveys in Johannesburg, South Africa. A multivariate data analysis technique was used to draw inferences from the data. With an 80.1% response rate, the findings showed that privacy and security do influence customer trust; security strongly influences customer trust and weakly influences satisfaction. In South Africa, customer loyalty towards websites is strongly determined by satisfaction and weakly determined by trust. Trust significantly moderates the effect of customer satisfaction on loyalty. The study implications and limitations are presented and future research directions are suggested.

Next-Generation Sequencing: An Emerging Tool for Drug Designing

2019 ◽  
Vol 25 (31) ◽  
pp. 3350-3357 ◽  
Author(s):  
Pooja Tripathi ◽  
Jyotsna Singh ◽  
Jonathan A. Lal ◽  
Vijay Tripathi
Keyword(s):  
Next Generation Sequencing ◽  
High Throughput ◽  
Large Scale ◽  
Massively Parallel Sequencing ◽  
Genomic Research ◽  
Biological Research ◽  
Next Generation ◽  
Human Welfare ◽  
Drug Designing ◽  
Generation Sequencing

Background: With the outbreak of high throughput next-generation sequencing (NGS), the biological research of drug discovery has been directed towards the oncology and infectious disease therapeutic areas, with extensive use in biopharmaceutical development and vaccine production. Method: In this review, an effort was made to address the basic background of NGS technologies, potential applications of NGS in drug designing. Our purpose is also to provide a brief introduction of various Nextgeneration sequencing techniques. Discussions: The high-throughput methods execute Large-scale Unbiased Sequencing (LUS) which comprises of Massively Parallel Sequencing (MPS) or NGS technologies. The Next geneinvolved necessarily executes Largescale Unbiased Sequencing (LUS) which comprises of MPS or NGS technologies. These are related terms that describe a DNA sequencing technology which has revolutionized genomic research. Using NGS, an entire human genome can be sequenced within a single day. Conclusion: Analysis of NGS data unravels important clues in the quest for the treatment of various lifethreatening diseases and other related scientific problems related to human welfare.

Mix Networks: Existing Scenarios and Future Directions on Security and Privacy

2019 ◽  
Vol 14 ◽  
Author(s):  
Khaleel Ahmad ◽  
Afsar Kamal
Keyword(s):  
Security And Privacy ◽  
Research Progress ◽  
Future Research ◽  
Future Directions ◽  
Practical Solution ◽  
Research Gap ◽  
The Web ◽  
Privacy Enhancing Techniques

Background: Privacy enhancing techniques are developed in order to provide strong protection to cyberspace. These techniques aim to allow users to keep their identities hidden during the communication when they are sending email, making payments online, browsing the Web or posting to newsgroups. MixNet is the most practical solution for concealing identities of message and sender’s identities. Objective: It provides sender and receiver anonymity as well as message security. The main goal of MixNet is to overcome vulnerability and enhance the performance of communication. It can efficiently handle the messages of various length and produce desirable results with privacy. The main objective of this paper is to acquire information and concepts regarding MixNet. We also provide guidelines for future research and references. Methods : The designing of MixNet depends on what cryptosystem method is used. Symmetric and Asymmetric both are used. Other methods could be also used such as PIR, CSP and FDR model, RPC, Token-based approach or others. Result: In this paper we provide an overview of MixNet approaches and presented a survey on MixNet based techniques and different models. We also constructed the comparison tables as per our requirements for better understanding. For this purpose, we found a total of 120 articles related to the MixNet published between 1990 and 2018 from the most relevant scientific resources. However, only 86 papers were analyzed due to comprehensiveness and relevancy to this article. Conclusion: Focused on the security and privacy of communication and how it can be achieved. This survey also reveals research progress and research gap on MixNet.

Overview of Subsynchronous Oscillation in Grid-connected Wind Farm

2020 ◽  
Vol 13 (7) ◽  
pp. 969-979
Author(s):  
Xu Pei-Zhen ◽  
Lu Yong-Geng ◽  
Cao Xi-Min
Keyword(s):  
Power Systems ◽  
Wind Turbine ◽  
Large Scale ◽  
Wind Farm ◽  
Wind Farms ◽  
Induction Generator ◽  
Future Research ◽  
Stable Operation ◽  
Subsynchronous Oscillation ◽  
Different Types

Background: Over the past few years, the subsynchronous oscillation (SSO) caused by the grid-connected wind farm had a bad influence on the stable operation of the system and has now become a bottleneck factor restricting the efficient utilization of wind power. How to mitigate and suppress the phenomenon of SSO of wind farms has become the focus of power system research. Methods: This paper first analyzes the SSO of different types of wind turbines, including squirrelcage induction generator based wind turbine (SCIG-WT), permanent magnet synchronous generator- based wind turbine (PMSG-WT), and doubly-fed induction generator based wind turbine (DFIG-WT). Then, the mechanisms of different types of SSO are proposed with the aim to better understand SSO in large-scale wind integrated power systems, and the main analytical methods suitable for studying the SSO of wind farms are summarized. Results: On the basis of results, using additional damping control suppression methods to solve SSO caused by the flexible power transmission devices and the wind turbine converter is recommended. Conclusion: The current development direction of the SSO of large-scale wind farm grid-connected systems is summarized and the current challenges and recommendations for future research and development are discussed.

scholarly journals Cyberstalking Victimization Model Using Criminological Theory: A Systematic Literature Review, Taxonomies, Applications, Tools, and Validations

Electronics ◽  
2021 ◽  
Vol 10 (14) ◽  
pp. 1670
Author(s):  
Waheeb Abu-Ulbeh ◽  
Maryam Altalhi ◽  
Laith Abualigah ◽  
Abdulwahab Ali Almazroi ◽  
Putra Sumari ◽  
...  
Keyword(s):  
Data Analysis ◽  
Structural Equation ◽  
Large Scale ◽  
Review Paper ◽  
Essential Element ◽  
Routine Activities ◽  
Criminological Theory ◽  
Equation Modeling ◽  
Future Research ◽  
Proposed Model

Cyberstalking is a growing anti-social problem being transformed on a large scale and in various forms. Cyberstalking detection has become increasingly popular in recent years and has technically been investigated by many researchers. However, cyberstalking victimization, an essential part of cyberstalking, has empirically received less attention from the paper community. This paper attempts to address this gap and develop a model to understand and estimate the prevalence of cyberstalking victimization. The model of this paper is produced using routine activities and lifestyle exposure theories and includes eight hypotheses. The data of this paper is collected from the 757 respondents in Jordanian universities. This review paper utilizes a quantitative approach and uses structural equation modeling for data analysis. The results revealed a modest prevalence range is more dependent on the cyberstalking type. The results also indicated that proximity to motivated offenders, suitable targets, and digital guardians significantly influences cyberstalking victimization. The outcome from moderation hypothesis testing demonstrated that age and residence have a significant effect on cyberstalking victimization. The proposed model is an essential element for assessing cyberstalking victimization among societies, which provides a valuable understanding of the prevalence of cyberstalking victimization. This can assist the researchers and practitioners for future research in the context of cyberstalking victimization.

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