Genomic privacy, identity and dignity

2021 ◽  
pp. medethics-2020-106979
Author(s):  
Shlomo Cohen ◽  
Ro'i Zultan
Keyword(s):  
Big Data ◽  
Empirical Study ◽  
Human Dignity ◽  
Large Scale ◽  
Empirical Studies ◽  
Genomic Medicine ◽  
Private Sphere ◽  
Public Dataset ◽  
Genomic Privacy ◽  
People’S Attitudes

Significant advancements towards a future of big data genomic medicine, associated with large-scale public dataset repositories, intensify dilemmas of genomic privacy. To resolve dilemmas adequately, we need to understand the relative force of the competing considerations that make them up. Attitudes towards genomic privacy are complex and not well understood; understanding is further complicated by the vague claim of ‘genetic exceptionalism’. In this paper, we distinguish between consequentialist and non-consequentialist privacy interests: while the former are concerned with harms secondary to exposure, the latter represent the interest in a private sphere for its own sake, as an essential component of human dignity. Empirical studies of attitudes towards genomic privacy have almost never targeted specifically this important dignitary component of the privacy interest. In this paper we first articulate the question of a non-consequentialist genomic privacy interest, and then present results of an empirical study that probed people’s attitudes towards that interest. This was done via comparison to other non-consequentialist privacy interests, which are more tangible and can be more easily assessed. Our results indicate that the non-consequentialist genomic privacy interest is rather weak. This insight can assist in adjudicating dilemmas involving genomic privacy.

scholarly journals GrandBase: generating actionable knowledge from Big Data

2017 ◽  
Vol 1 (2) ◽  
pp. 105-126 ◽  
Author(s):  
Xiu Susie Fang ◽  
Quan Z. Sheng ◽  
Xianzhi Wang ◽  
Anne H.H. Ngu ◽  
Yihong Zhang
Keyword(s):  
Big Data ◽  
Large Scale ◽  
Empirical Studies ◽  
Knowledge Extraction ◽  
Data Sources ◽  
Future Research ◽  
Content Type ◽  
Actionable Knowledge ◽  
True Value ◽  
Truth Discovery

Purpose This paper aims to propose a system for generating actionable knowledge from Big Data and use this system to construct a comprehensive knowledge base (KB), called GrandBase. Design/methodology/approach In particular, this study extracts new predicates from four types of data sources, namely, Web texts, Document Object Model (DOM) trees, existing KBs and query stream to augment the ontology of the existing KB (i.e. Freebase). In addition, a graph-based approach to conduct better truth discovery for multi-valued predicates is also proposed. Findings Empirical studies demonstrate the effectiveness of the approaches presented in this study and the potential of GrandBase. The future research directions regarding GrandBase construction and extension has also been discussed. Originality/value To revolutionize our modern society by using the wisdom of Big Data, considerable KBs have been constructed to feed the massive knowledge-driven applications with Resource Description Framework triples. The important challenges for KB construction include extracting information from large-scale, possibly conflicting and different-structured data sources (i.e. the knowledge extraction problem) and reconciling the conflicts that reside in the sources (i.e. the truth discovery problem). Tremendous research efforts have been contributed on both problems. However, the existing KBs are far from being comprehensive and accurate: first, existing knowledge extraction systems retrieve data from limited types of Web sources; second, existing truth discovery approaches commonly assume each predicate has only one true value. In this paper, the focus is on the problem of generating actionable knowledge from Big Data. A system is proposed, which consists of two phases, namely, knowledge extraction and truth discovery, to construct a broader KB, called GrandBase.

Multi Disease-Prediction Framework Using Hybrid Deep Learning: An Optimal Prediction Model (Preprint)

2020 ◽  
Author(s):  
Anusha Ampavathi ◽  
Vijaya Saradhi T
Keyword(s):  
Feature Extraction ◽  
Big Data ◽  
Deep Learning ◽  
Weight Function ◽  
Optimization Algorithm ◽  
Large Scale ◽  
Heuristic Algorithms ◽  
Disease Prediction ◽  
Health Care Decisions ◽  
Proposed Model

UNSTRUCTURED Big data and its approaches are generally helpful for healthcare and biomedical sectors for predicting the disease. For trivial symptoms, the difficulty is to meet the doctors at any time in the hospital. Thus, big data provides essential data regarding the diseases on the basis of the patient’s symptoms. For several medical organizations, disease prediction is important for making the best feasible health care decisions. Conversely, the conventional medical care model offers input as structured that requires more accurate and consistent prediction. This paper is planned to develop the multi-disease prediction using the improvised deep learning concept. Here, the different datasets pertain to “Diabetes, Hepatitis, lung cancer, liver tumor, heart disease, Parkinson’s disease, and Alzheimer’s disease”, from the benchmark UCI repository is gathered for conducting the experiment. The proposed model involves three phases (a) Data normalization (b) Weighted normalized feature extraction, and (c) prediction. Initially, the dataset is normalized in order to make the attribute's range at a certain level. Further, weighted feature extraction is performed, in which a weight function is multiplied with each attribute value for making large scale deviation. Here, the weight function is optimized using the combination of two meta-heuristic algorithms termed as Jaya Algorithm-based Multi-Verse Optimization algorithm (JA-MVO). The optimally extracted features are subjected to the hybrid deep learning algorithms like “Deep Belief Network (DBN) and Recurrent Neural Network (RNN)”. As a modification to hybrid deep learning architecture, the weight of both DBN and RNN is optimized using the same hybrid optimization algorithm. Further, the comparative evaluation of the proposed prediction over the existing models certifies its effectiveness through various performance measures.

Bullying, School Violence, and Climate in Evolving Contexts

2018 ◽  
Author(s):  
Ron Avi Astor ◽  
Rami Benbenisthty
Keyword(s):  
School Violence ◽  
School Safety ◽  
Media Coverage ◽  
Large Scale ◽  
Ecological Model ◽  
Empirical Studies ◽  
Practical Applications ◽  
Teacher Student ◽  
Area Of Interest ◽  
New Research

Since 2005, the bullying, school violence, and school safety literatures have expanded dramatically in content, disciplines, and empirical studies. However, with this massive expansion of research, there is also a surprising lack of theoretical and empirical direction to guide efforts on how to advance our basic science and practical applications of this growing scientific area of interest. Parallel to this surge in interest, cultural norms, media coverage, and policies to address school safety and bullying have evolved at a remarkably quick pace over the past 13 years. For example, behaviors and populations that just a decade ago were not included in the school violence, bullying, and school safety discourse are now accepted areas of inquiry. These include, for instance, cyberbullying, sexting, social media shaming, teacher–student and student–teacher bullying, sexual harassment and assault, homicide, and suicide. Populations in schools not previously explored, such as lesbian, gay, bisexual, transgender, and queer students and educators and military- and veteran-connected students, become the foci of new research, policies, and programs. As a result, all US states and most industrialized countries now have a complex quilt of new school safety and bullying legislation and policies. Large-scale research and intervention funding programs are often linked to these policies. This book suggests an empirically driven unifying model that brings together these previously distinct literatures. This book presents an ecological model of school violence, bullying, and safety in evolving contexts that integrates all we have learned in the 13 years, and suggests ways to move forward.

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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