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Genomic Data Sharing

Genomic Data Sharing Book
Author : Jennifer B. Mccormick,Jyotishman Pathak
Publisher : Academic Press
Release : 2022-03-15
ISBN : 9780128198032
Language : En, Es, Fr & De

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Book Description :

Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine provides a comprehensive overview of current and emerging issues in genomic data sharing. In this book, international leaders in genomic data examine these issues in-depth, offering practical case studies that highlight key successes, challenges and opportunities. Sections discuss the eMERGE Network, Undiagnosed Disease Network, Vanderbilt Biobank, Marshfield Clinic Biobank, Minnesota Authorization, Rochester Epidemiology Project, NIH sponsored biobanks, GINA, and Global Alliance for Genomics and Health (GA4GH). In addition to these perspectives from the frontlines, the book also provides succinct overviews of ethical, legal, social and IT challenges. Clinician investigators, clinicians affiliated with academic medical centers, policymakers and regulators will also gain insights that will allow them to navigate the increasingly complex ethical, social and clinical landscape of genomic data sharing. Covers both technical and ELSI (ethical, legal, and social implications) perspectives on genomic data sharing Includes applied case studies of existing genomic data sharing consortia, including the eMERGE Network, Undiagnosed Disease Network, and the Global Alliance for Genomics and Health (GA4GH), among others Features chapter contributions from international leaders in genomic data sharing

Responsible Genomic Data Sharing

Responsible Genomic Data Sharing Book
Author : Xiaoqian Jiang,Haixu Tang
Publisher : Academic Press
Release : 2020-03-14
ISBN : 0128163399
Language : En, Es, Fr & De

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Book Description :

Responsible Genomic Data Sharing: Challenges and Approaches brings together international experts in genomics research, bioinformatics and digital security who analyze common challenges in genomic data sharing, privacy preserving technologies, and best practices for large-scale genomic data sharing. Practical case studies, including the Global Alliance for Genomics and Health, the Beacon Network, and the Matchmaker Exchange, are discussed in-depth, illuminating pathways forward for new genomic data sharing efforts across research and clinical practice, industry and academia. Addresses privacy preserving technologies and how they can be applied to enable responsible genomic data sharing Employs illustrative case studies and analyzes emerging genomic data sharing efforts, common challenges and lessons learned Features chapter contributions from international experts in responsible approaches to genomic data sharing

Comparing Genomic Data Sharing Policies from the National Institutes of Health Global Alliance and Reg4All

Comparing Genomic Data Sharing Policies from the National Institutes of Health  Global Alliance  and Reg4All Book
Author : Katherine L. Kwong
Publisher : Unknown
Release : 2014
ISBN : 0987650XXX
Language : En, Es, Fr & De

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Book Description :

Genomic data sharing has become increasingly important with "big data" genomics. Successful genomic data sharing requires multiple stakeholders cooperating with one another. Using discourse analysis, I compared three proposed genomic data sharing policies created by the National Institutes of Health, Reg4All and the Global Alliance for Genomics and Health. Data producers, data users, funders, participants, and end users were differently involved in the policy development process leading to policies that prioritize different needs and interests in genomic data sharing. The NIH policy satisfies the interests of data users and funders; Reg4All's policy focuses on participants, end users, and data users, and the Global Alliance policy represents a compromise leaving all stakeholders somewhat satisfied. This analysis highlights how the policy options benefit the different stakeholders and suggests ways to create a system that more evenly addresses the concerns and interests of all stakeholders, allowing for more equitable genomic data sharing.

Personal Genomes Accessing Sharing and Interpretation

Personal Genomes  Accessing  Sharing  and Interpretation Book
Author : Manuel Corpas,Stephan Beck,Gustavo Glusman,Mahsa Shabani
Publisher : Frontiers Media SA
Release : 2021-08-02
ISBN : 2889711277
Language : En, Es, Fr & De

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Book Description :

Download Personal Genomes Accessing Sharing and Interpretation book written by Manuel Corpas,Stephan Beck,Gustavo Glusman,Mahsa Shabani, available in PDF, EPUB, and Kindle, or read full book online anywhere and anytime. Compatible with any devices.

Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re use across Societies

Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re use across Societies Book
Author : OECD
Publisher : OECD Publishing
Release : 2019-11-26
ISBN : 9264660658
Language : En, Es, Fr & De

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Book Description :

This report examines the opportunities of enhancing access to and sharing of data (EASD) in the context of the growing importance of artificial intelligence and the Internet of Things. It discusses how EASD can maximise the social and economic value of data re-use and how the related risks and challenges can be addressed. It highlights the trade-offs, complementarities and possible unintended consequences of policy action – and inaction. It also provides examples of EASD approaches and policy initiatives in OECD countries and partner economies.

Medical and Health Genomics

Medical and Health Genomics Book
Author : Dhavendra Kumar,Stylianos Antonarakis
Publisher : Academic Press
Release : 2016-06-04
ISBN : 0127999221
Language : En, Es, Fr & De

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Book Description :

Medical and Health Genomics provides concise and evidence-based technical and practical information on the applied and translational aspects of genome sciences and the technologies related to non-clinical medicine and public health. Coverage is based on evolving paradigms of genomic medicine—in particular, the relation to public and population health genomics now being rapidly incorporated in health management and administration, with further implications for clinical population and disease management. Provides extensive coverage of the emergent field of health genomics and its huge relevance to healthcare management Presents user-friendly language accompanied by explanatory diagrams, figures, and many references for further study Covers the applied, but non-clinical, sciences across disease discovery, genetic analysis, genetic screening, and prevention and management Details the impact of clinical genomics across a diverse array of public and community health issues, and within a variety of global healthcare systems

Sharing Clinical Trial Data

Sharing Clinical Trial Data Book
Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data
Publisher : National Academies Press
Release : 2015-04-20
ISBN : 0309316324
Language : En, Es, Fr & De

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Book Description :

Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research--from funders, to researchers, to journals, to physicians, and ultimately, to patients.

Genomic and Precision Medicine

Genomic and Precision Medicine Book
Author : Geoffrey S. Ginsburg,Huntington F Willard
Publisher : Academic Press
Release : 2016-11-22
ISBN : 0128006560
Language : En, Es, Fr & De

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Book Description :

Genomic and Precision Medicine: Translation and Implementation highlights the various points along the continuum from health to disease where genomic information is impacting clinical decision-making and leading to more personalization of health care. The book pinpoints the challenges, barriers, and solutions that have been, or are being, brought forward to enable translation of genome based technologies into health care. A variety of infrastructure (data systems and EMRs), policy (regulatory, reimbursement, privacy), and research (comparative effectiveness research, learning health system approaches) strategies are also discussed. Readers will find this volume to be an invaluable resource for the translational genomics and implementation science that is required to fully realize personalized health care. Provides a comprehensive volume on the translation and implementation of biology into health care provision Presents succinct commentary and key learning points that will assist readers with their local needs for translation and implementation Includes an up-to-date overview on major ‘translational events’ in genomic and personalized medicine, along with lessons learned

Reflections on Sharing Clinical Trial Data

Reflections on Sharing Clinical Trial Data Book
Author : National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Care Services,Board on Health Sciences Policy,Roundtable on Genomics and Precision Health,National Cancer Policy Forum,Forum on Neuroscience and Nervous System Disorders,Forum on Drug Discovery, Development, and Translation
Publisher : National Academies Press
Release : 2020-11-20
ISBN : 030967915X
Language : En, Es, Fr & De

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Book Description :

On November 18 and 19, 2019, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop in Washington, DC, titled Sharing Clinical Trial Data: Challenges and a Way Forward. The workshop followed the release of the 2015 Institute of Medicine (IOM) consensus study report Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk, and was designed to examine the current state of clinical trial data sharing and reuse and to consider ways in which policy, technology, incentives, and governance could be leveraged to further encourage and enhance data sharing. This publication summarizes the presentations and discussions from the workshop.

A Beginner s Guide to Using Open Access Data

A Beginner   s Guide to Using Open Access Data Book
Author : Saif Aldeen Saleh AlRyalat,Shaher Momani
Publisher : CRC Press
Release : 2019-02-12
ISBN : 0429667671
Language : En, Es, Fr & De

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Book Description :

Open Access Data is emerging as a source for cutting edge scholarship. This concise book provides guidance from generating a research idea to publishing results. Both young researchers and well-established scholars can use this book to upgrade their skills with respect to emerging data sources, analysis, and even post-publishing promotion. At the end of each chapter, a tutorial simulates a real example, allowing readers to apply what they learned about accessing open data, and analyzing this data to reach the results. This book can be of use by established researchers analyzing data, publishing, and actively promoting ongoing and research. Key selling features: Describes the steps, from A-Z, for doing open data research Includes interactive tutorials following each chapter Provides guidelines for readers so that they can use their own accessed open data Reviews recent software and websites promoting and enabling open data research Supplements websites which update recent open data sources

Exploring Blockchain in Healthcare

Exploring Blockchain in Healthcare Book
Author : Anurag Srivastava
Publisher : BPB Publications
Release : 2022-02-28
ISBN : 9355510209
Language : En, Es, Fr & De

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Book Description :

An overview of the Healthcare Industry and Applications of the Blockchain KEY FEATURES ● Includes graphical representations and architecture schematics for healthcare processes powered by the blockchain technology. ● Real-world examples of how medical and pharma companies can use a blockchain in healthcare. ● Includes algorithms and procedures for smart contracts to provide more in-depth knowledge. DESCRIPTION This book aims to analyze the role of blockchain technology in healthcare and how medical tech teams can establish a digital and linked healthcare system for the modern-day. After reading this book, readers will be able to create, develop, and implement blockchain-based healthcare business cases. This book explains methods by which readers can understand several sectors of the healthcare industry, including pharmaceutical supply chain, healthcare insurance, drug administration, biological instruments, and smart labs, genomics, vaccination administration and policies, and the processing of healthcare data. The book also discusses Ethereum, Hyperledger, Multichain, and other popular blockchain frameworks in detail, with examples drawn from the real world. This book contains sample scripts, algorithms, processes, and an architectural design that may effectively illustrate the healthcare process. After reading the book, readers will be able to create new blockchain-based products and processes to address various healthcare problems. Regardless of the level of technical experience of the reader, this book will guide them through developing blockchain-based use cases. WHAT YOU WILL LEARN ● Acquaint yourself with the blockchain technology and the connected-healthcare system. ● Develop and implement blockchain-enabled smart contracts. ● Utilize cutting-edge technologies such as artificial intelligence/machine learning, big data, and cloud computing in conjunction with a blockchain. ● Develop a blockchain-based paradigm for sharing medical and healthcare data with ecosystem partners. ● Tokenize assets to create new revenue streams and business prospects. ● Implement effective healthcare policy implementation in the areas of medications and vaccinations. WHO THIS BOOK IS FOR This book is intended for blockchain consultants, digital transformation experts, CxOs, medical technology professionals, and blockchain enthusiasts who are interested in exploring, comprehending, and transforming traditional medical IT infrastructure into a Blockchain-powered powerful company. Although no such prior knowledge of programming is needed, the basics of coding would be helpful. TABLE OF CONTENTS 1. An Overview of the Healthcare Industry 2. Blockchain Fundamentals 3. Blockchain's Application in Healthcare 4. Blockchain in EHR and HIS 5. Pharmaceutical Supply Chain and Drug Administration 6. Blockchain in the Healthcare Insurance Industry 7. Digital Medical Certificates and Prescriptions 8. Medical Equipment and Smart Labs 9. Understanding Genomics 10. Vaccination and Other Healthcare Policies

Genomic sequencing of SARS CoV 2

Genomic sequencing of SARS CoV 2 Book
Author : Anonim
Publisher : World Health Organization
Release : 2021-01-08
ISBN : 9240018441
Language : En, Es, Fr & De

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Book Description :

Download Genomic sequencing of SARS CoV 2 book written by , available in PDF, EPUB, and Kindle, or read full book online anywhere and anytime. Compatible with any devices.

Bioinformatics Medical Informatics and the Law

Bioinformatics  Medical Informatics and the Law Book
Author : Contreras, Jorge L.,Cuticchia , A. J.,Kirsch, Gregory J.
Publisher : Edward Elgar Publishing
Release : 2022-01-11
ISBN : 183910595X
Language : En, Es, Fr & De

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Book Description :

In recent years the field of bioinformatics has emerged from the university research laboratory and entered the mainstream healthcare establishment. During this time there has been a rapid increase of legal developments affecting this dynamic field, from Supreme Court decisions radically altering the patentability of informatics inventions to major developments in privacy law both in Europe and the U.S. This edited book strives to offer the reader insight into some of the major legal trends and considerations applicable to these fields today.

Genomic Medicine

Genomic Medicine Book
Author : Dhavendra Kumar,Charis Eng
Publisher : Oxford University Press
Release : 2014-09-26
ISBN : 0199398089
Language : En, Es, Fr & De

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Book Description :

The first edition of Genomics and Clinical Medicine provided an overview of genomics-based advances in disease susceptibility, diagnosis, and prediction of treatment outcomes in various areas of medicine. Since its publication, the science of genomics has made tremendous progress, and exciting new developments in biotechnology and bioinformatics have created possibilities that were inconceivable only a few years ago. This completely revised second edition of Genomic Medicine reflects the rapidly changing face of applied and translational genomics in the medical and health context and provides a comprehensive coverage of principles of genetics and genomics relevant to the practice of medicine.

Ethical Issues in Pediatric Hematology Oncology

Ethical Issues in Pediatric Hematology Oncology Book
Author : Kate A. Mazur,Stacey L. Berg
Publisher : Springer Nature
Release : 2019-11-27
ISBN : 3030226840
Language : En, Es, Fr & De

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Book Description :

This book identifies the various ethical challenges that arise in pediatric hematology/oncology and provides the necessary tools to overcome these challenges. Aiming to expand upon and strengthen providers’ knowledge and experience in pediatric health care ethical issues, the text positions providers to be beneficial resources to faculty, staff, patients, and families within their institution. It presents a multidisciplinary approach to sound ethical practices that is necessary to effectively care for these patients and their families. The book reviews the principles of ethical decision-making, the unique difficulties in using children as research subjects, common ethical conundrums involved in providing end-of-life care, and general moralities of professional practice. Written by experts in their fields, Ethical Issues in Pediatric Hematology/Oncology is an innovative and valuable resource for clinicians, practitioners, and trainees who work in the field of pediatric hematology/oncology.

Open Science by Design

Open Science by Design Book
Author : National Academies of Sciences, Engineering, and Medicine,Policy and Global Affairs,Board on Research Data and Information,Committee on Toward an Open Science Enterprise
Publisher : National Academies Press
Release : 2018-08-09
ISBN : 0309476275
Language : En, Es, Fr & De

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Book Description :

Openness and sharing of information are fundamental to the progress of science and to the effective functioning of the research enterprise. The advent of scientific journals in the 17th century helped power the Scientific Revolution by allowing researchers to communicate across time and space, using the technologies of that era to generate reliable knowledge more quickly and efficiently. Harnessing today's stunning, ongoing advances in information technologies, the global research enterprise and its stakeholders are moving toward a new open science ecosystem. Open science aims to ensure the free availability and usability of scholarly publications, the data that result from scholarly research, and the methodologies, including code or algorithms, that were used to generate those data. Open Science by Design is aimed at overcoming barriers and moving toward open science as the default approach across the research enterprise. This report explores specific examples of open science and discusses a range of challenges, focusing on stakeholder perspectives. It is meant to provide guidance to the research enterprise and its stakeholders as they build strategies for achieving open science and take the next steps.

Positioning and Power in Academic Publishing Players Agents and Agendas

Positioning and Power in Academic Publishing  Players  Agents and Agendas Book
Author : F. Loizides,B. Schmidt
Publisher : IOS Press
Release : 2016-05-26
ISBN : 1614996490
Language : En, Es, Fr & De

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Book Description :

The field of electronic publishing has grown exponentially in the last two decades, but we are still in the middle of this digital transformation. With technologies coming and going for all kinds of reasons, the distribution of economic, technological and discursive power continues to be negotiated.This book presents the proceedings of the 20th Conference on Electronic Publishing (Elpub), held in G�ttingen, Germany, in June 2016. This year's conference explores issues of positioning and power in academic publishing, and it brings together world leading stakeholders such as academics, practitioners, policymakers, students and entrepreneurs from a wide variety of fields to exchange information and discuss the advent of innovations in the areas of electronic publishing, as well as reflect on the development in the field over the last 20 years. Topics covered in the papers include how to maintain the quality of electronic publications, modeling processes and the increasingly prevalent issue of open access, as well as new systems, database repositories and datasets.This overview of the field will be of interest to all those who work in or make use of electronic publishing.

Methods in Biomedical Informatics

Methods in Biomedical Informatics Book
Author : Indra Neil Sarkar
Publisher : Academic Press
Release : 2013-09-03
ISBN : 0124016847
Language : En, Es, Fr & De

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Book Description :

Beginning with a survey of fundamental concepts associated with data integration, knowledge representation, and hypothesis generation from heterogeneous data sets, Methods in Biomedical Informatics provides a practical survey of methodologies used in biological, clinical, and public health contexts. These concepts provide the foundation for more advanced topics like information retrieval, natural language processing, Bayesian modeling, and learning classifier systems. The survey of topics then concludes with an exposition of essential methods associated with engineering, personalized medicine, and linking of genomic and clinical data. Within an overall context of the scientific method, Methods in Biomedical Informatics provides a practical coverage of topics that is specifically designed for: (1) domain experts seeking an understanding of biomedical informatics approaches for addressing specific methodological needs; or (2) biomedical informaticians seeking an approachable overview of methodologies that can be used in scenarios germane to biomedical research. Contributors represent leading biomedical informatics experts: individuals who have demonstrated effective use of biomedical informatics methodologies in the real-world, high-quality biomedical applications Material is presented as a balance between foundational coverage of core topics in biomedical informatics with practical "in-the-trenches" scenarios. Contains appendices that function as primers on: (1) Unix; (2) Ruby; (3) Databases; and (4) Web Services.

11th International Conference on Practical Applications of Computational Biology Bioinformatics

11th International Conference on Practical Applications of Computational Biology   Bioinformatics Book
Author : Florentino Fdez-Riverola,Mohd Saberi Mohamad,Miguel Rocha,Juan F. De Paz,Tiago Pinto
Publisher : Springer
Release : 2017-06-19
ISBN : 3319608169
Language : En, Es, Fr & De

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Book Description :

Biological and biomedical research are increasingly driven by experimental techniques that challenge our ability to analyse, process and extract meaningful knowledge from the underlying data. The impressive capabilities of next-generation sequencing technologies, together with novel and constantly evolving, distinct types of omics data technologies, have created an increasingly complex set of challenges for the growing fields of Bioinformatics and Computational Biology. The analysis of the datasets produced and their integration call for new algorithms and approaches from fields such as Databases, Statistics, Data Mining, Machine Learning, Optimization, Computer Science and Artificial Intelligence. Clearly, Biology is more and more a science of information and requires tools from the computational sciences. In the last few years, we have seen the rise of a new generation of interdisciplinary scientists with a strong background in the biological and computational sciences. In this context, the interaction of researchers from different scientific fields is, more than ever, of foremost importance in boosting the research efforts in the field and contributing to the education of a new generation of Bioinformatics scientists. The PACBB’17 conference was intended to contribute to this effort and promote this fruitful interaction, with a technical program that included 39 papers spanning many different sub-fields in Bioinformatics and Computational Biology. Further, the conference promoted the interaction of scientists from diverse research groups and with a distinct background (computer scientists, mathematicians, biologists).

Secondary Findings in Genomic Research

Secondary Findings in Genomic Research Book
Author : Anonim
Publisher : Academic Press
Release : 2020-02-29
ISBN : 0128167483
Language : En, Es, Fr & De

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Book Description :

Secondary Findings in Genomic Research offers a single, highly accessible resource on interpreting, managing and disclosing secondary findings in genomic research. With chapters written by experts in the field, this book is the first to concisely explain the ethical and practical issues raised by secondary genomics findings for a multi and interdisciplinary audience of genomic researchers, translational scientists, clinicians, medical students, genetic counselors, ethicists, legal experts and law students, public policy specialists and regulators. Contributors from Europe, North America, and Asia effectively synthesize perspectives from a spectrum of different scientific, societal, and global contexts, and offer pragmatic approaches to a range of topics, including oversight, governance and policy surrounding secondary genomic results, criteria for identifying results for return, communication and consent, stakeholders’ attitudes and perspectives, disclosing results, and clinical, patient-centered protocols. Thoroughly addresses the scientific, ethical, practical and clinical issues raised by secondary findings resulting from genomic research, including active debate and challenges in the field Provides researchers, clinicians, regulators, and stakeholders with a holistic, interdisciplinary approach to interpreting, managing and disclosing secondary findings Brings together expert analysis from scholars across Europe, North America, and Asia representing a wide variety of scientific and societal contexts