Responsible Genomic Data Sharing Book

Responsible Genomic Data Sharing


  • Author : Xiaoqian Jiang
  • Publisher : Academic Press
  • Release Date : 2020-03-14
  • Genre: Science
  • Pages : 210
  • ISBN 10 : 9780128163399

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Responsible Genomic Data Sharing Excerpt :

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

Sharing Clinical Trial Data Book

Sharing Clinical Trial Data


  • Author : Institute of Medicine
  • Publisher : National Academies Press
  • Release Date : 2015-04-20
  • Genre: Medical
  • Pages : 304
  • ISBN 10 : 9780309316323

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Sharing Clinical Trial Data Excerpt :

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 Data Sharing Book

Genomic Data Sharing


  • Author : Jennifer B. Mccormick
  • Publisher : Academic Press
  • Release Date : 2022-12-10
  • Genre: Medical
  • Pages : 232
  • ISBN 10 : 9780128198049

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Genomic Data Sharing Excerpt :

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

Sharing Clinical Research Data Book

Sharing Clinical Research Data


  • Author : Institute of Medicine
  • Publisher : National Academies Press
  • Release Date : 2013-06-07
  • Genre: Medical
  • Pages : 157
  • ISBN 10 : 9780309268745

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Sharing Clinical Research Data Excerpt :

Pharmaceutical companies, academic researchers, and government agencies such as the Food and Drug Administration and the National Institutes of Health all possess large quantities of clinical research data. If these data were shared more widely within and across sectors, the resulting research advances derived from data pooling and analysis could improve public health, enhance patient safety, and spur drug development. Data sharing can also increase public trust in clinical trials and conclusions derived from them by lending transparency to the clinical research process. Much of this information, however, is never shared. Retention of clinical research data by investigators and within organizations may represent lost opportunities in biomedical research. Despite the potential benefits that could be accrued from pooling and analysis of shared data, barriers to data sharing faced by researchers in industry include concerns about data mining, erroneous secondary analyses of data, and unwarranted litigation, as well as a desire to protect confidential commercial information. Academic partners face significant cultural barriers to sharing data and participating in longer term collaborative efforts that stem from a desire to protect intellectual autonomy and a career advancement system built on priority of publication and citation requirements. Some barriers, like the need to protect patient privacy, pre- sent challenges for both sectors. Looking ahead, there are also a number of technical challenges to be faced in analyzing potentially large and heterogeneous datasets. This public workshop focused on strategies to facilitate sharing of clinical research data in order to advance scientific knowledge and public health. While the workshop focused on sharing of data from preplanned interventional studies of human subjects, models and projects involving sharing of other clinical data types were considered to the extent that they provided lessons learned and best practices. Th

Genetic Variation Book

Genetic Variation


  • Author : Michael R. Barnes
  • Publisher : Humana Press
  • Release Date : 2014-10-20
  • Genre: Science
  • Pages : 388
  • ISBN 10 : 1627038264

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Genetic Variation Excerpt :

“Your genome is an email attachment” What a difference a few years can make? In 2001, to a global fanfare, the completion of the frst draft sequence of the human genome was announced. This had been a Herculean effort, involving thousands of researchers and millions of dollars. Today, a project to re-sequence 1,000 genomes is well underway, and within a year or two, your own “personal genome” is likely to be available for a few thousand pounds, a price that will undoubtedly decrease further. We are fast approaching the day when your genome will be available as an email attachment (about 4 Mb). The key to this feat is the fact that any two human genomes are more than 99% identical, so rather than representing every base, there is really only a requirement to store the 1% of variable sequence judged against a common reference genome. This brings us directly to the focus of this edition of Methods in Molecular Biology, Genetic Variation. The human genome was once the focus of biology, but now individual genome var- tion is taking the center stage. This new focus on individual variation ultimately democ- tizes biology, offering individuals insight into their own phenotype. But these advances also raise huge concerns of data misuse, misinterpretation, and misunderstanding. The immediacy of individual genomes also serves to highlight our relative ignorance of human genetic variation, underlining the need for more studies of the nature and impact of genetic variation on human phenotypes.

Uneven Ground Book

Uneven Ground


  • Author : David Eugene Wilkins
  • Publisher : University of Oklahoma Press
  • Release Date : 2001
  • Genre: Social Science
  • Pages : 340
  • ISBN 10 : 0806133953

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Uneven Ground Excerpt :

In the early 1970s, the federal government began recognizing self-determination for American Indian nations. As sovereign entities, Indian nations have been able to establish policies concerning health care, education, religious freedom, law enforcement, gaming, and taxation. David E. Wilkins and K. Tsianina Lomawaima discuss how the political rights and sovereign status of Indian nations have variously been respected, ignored, terminated, and unilaterally modified by federal lawmakers as a result of the ambivalent political and legal status of tribes under western law.

Genomic and Precision Medicine Book

Genomic and Precision Medicine


  • Author : Geoffrey S. Ginsburg
  • Publisher : Academic Press
  • Release Date : 2016-11-22
  • Genre: Science
  • Pages : 398
  • ISBN 10 : 9780128006566

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Genomic and Precision Medicine Excerpt :

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

Public Health Informatics and Information Systems Book

Public Health Informatics and Information Systems


  • Author : J.A. Magnuson
  • Publisher : Springer Science & Business Media
  • Release Date : 2013-11-29
  • Genre: Medical
  • Pages : 666
  • ISBN 10 : 9781447142379

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Public Health Informatics and Information Systems Excerpt :

This revised edition covers all aspects of public health informatics and discusses the creation and management of an information technology infrastructure that is essential in linking state and local organizations in their efforts to gather data for the surveillance and prevention. Public health officials will have to understand basic principles of information resource management in order to make the appropriate technology choices that will guide the future of their organizations. Public health continues to be at the forefront of modern medicine, given the importance of implementing a population-based health approach and to addressing chronic health conditions. This book provides informatics principles and examples of practice in a public health context. In doing so, it clarifies the ways in which newer information technologies will improve individual and community health status. This book's primary purpose is to consolidate key information and promote a strategic approach to information systems and development, making it a resource for use by faculty and students of public health, as well as the practicing public health professional. Chapter highlights include: The Governmental and Legislative Context of Informatics; Assessing the Value of Information Systems; Ethics, Information Technology, and Public Health; and Privacy, Confidentiality, and Security. Review questions are featured at the end of every chapter. Aside from its use for public health professionals, the book will be used by schools of public health, clinical and public health nurses and students, schools of social work, allied health, and environmental sciences.

Introduction to Molecular Genomics Book

Introduction to Molecular Genomics


  • Author : Maryam Javed
  • Publisher : Bentham Science Publishers
  • Release Date : 2021-11-02
  • Genre: Science
  • Pages : 202
  • ISBN 10 : 9781681089263

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Introduction to Molecular Genomics Excerpt :

Introduction to Molecular Genomics introduces the college student to the fundamental concepts of molecular biology and genomics. The text puts an emphasis on important topics in the subject that contribute to the learner’s understanding. These topics include molecular genomics, biodiversity and molecular phenomenon behind evolution of species, modern molecular methods for enhanced genomics research, DNA modifications at the molecular level for transgenic animal species, the role of cell environment on the gene expression, to name a few. The book has been designed to suit the requirements of educational courses in molecular biology, genomics and biochemistry. Key features - Covers basic concepts on key topics in molecular biology and genomics - Simple easy-to-read layout - Includes references for further reading - Includes a section on ethical aspects of scientific research Introduction to Molecular Genomics is a simple primer for students in applied or advanced life science courses at undergraduate levels

Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2 Book

Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2


  • Author : National Academies of Sciences, Engineering, and Medicine
  • Publisher : National Academies Press
  • Release Date : 2020-10-29
  • Genre: Medical
  • Pages : 111
  • ISBN 10 : 9780309680912

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Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2 Excerpt :

In December 2019, new cases of severe pneumonia were first detected in Wuhan, China, and the cause was determined to be a novel beta coronavirus related to the severe acute respiratory syndrome (SARS) coronavirus that emerged from a bat reservoir in 2002. Within six months, this new virusâ€"SARS coronavirus 2 (SARS-CoV-2)â€"has spread worldwide, infecting at least 10 million people with an estimated 500,000 deaths. COVID-19, the disease caused by SARS-CoV-2, was declared a public health emergency of international concern on January 30, 2020 by the World Health Organization (WHO) and a pandemic on March 11, 2020. To date, there is no approved effective treatment or vaccine for COVID-19, and it continues to spread in many countries. Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2: Modernizing Pandemic Response Strategies lays out a framework to define and describe the data needs for a system to track and correlate viral genome sequences with clinical and epidemiological data. Such a system would help ensure the integration of data on viral evolution with detection, diagnostic, and countermeasure efforts. This report also explores data collection mechanisms to ensure a representative global sample set of all relevant extant sequences and considers challenges and opportunities for coordination across existing domestic, global, and regional data sources.

Principles and Obstacles for Sharing Data from Environmental Health Research Book

Principles and Obstacles for Sharing Data from Environmental Health Research


  • Author : National Academies of Sciences, Engineering, and Medicine
  • Publisher : National Academies Press
  • Release Date : 2016-04-29
  • Genre: Science
  • Pages : 114
  • ISBN 10 : 9780309370882

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Principles and Obstacles for Sharing Data from Environmental Health Research Excerpt :

On March 19, 2014, the National Academies of Sciences, Engineering, and Medicine held a workshop on the topic of the sharing of data from environmental health research. Experts in the field of environmental health agree that there are benefits to sharing research data, but questions remain regarding how to effectively make these data available. The sharing of data derived from human subjects-making them both transparent and accessible to others-raises a host of ethical, scientific, and process questions that are not always present in other areas of science, such as physics, geology, or chemistry. The workshop participants explored key concerns, principles, and obstacles to the responsible sharing of data used in support of environmental health research and policy making while focusing on protecting the privacy of human subjects and addressing the concerns of the research community. Principles and Obstacles for Sharing Data from Environmental Health Research summarizes the presentations and discussions from the workshop.

Discussion Framework for Clinical Trial Data Sharing Book

Discussion Framework for Clinical Trial Data Sharing


  • Author : Committee on Strategies for Responsible Sharing of Clinical Trial Data
  • Publisher : National Academy Press
  • Release Date : 2014-01-22
  • Genre: Medical
  • Pages : 72
  • ISBN 10 : 0309297796

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Discussion Framework for Clinical Trial Data Sharing Excerpt :

Sharing data generated through the conduct of clinical trials offers the promise of placing evidence about the safety and efficacy of therapies and clinical interventions on a firmer basis and enhancing the benefits of clinical trials. Ultimately, such data sharing - if carried out appropriately - could lead to improved clinical care and greater public trust in clinical research and health care. "Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities" is part of a study of how data from clinical trials might best be shared. This document is designed as a framework for discussion and public comment. This framework is being released to stimulate reactions and comments from stakeholders and the public. The framework summarizes the committee's initial thoughts on guiding principles that underpin responsible sharing of clinical trial data, defines key elements of clinical trial data and data sharing, and describes a selected set of clinical trial data sharing activities.

Progress and Challenges in Precision Medicine Book

Progress and Challenges in Precision Medicine


  • Author : Mukesh Verma
  • Publisher : Academic Press
  • Release Date : 2016-12-22
  • Genre: Medical
  • Pages : 344
  • ISBN 10 : 9780128095027

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Progress and Challenges in Precision Medicine Excerpt :

Progress and Challenges in Precision Medicine presents an insightful overview to the myriad factors of personalized and precision medicine. The availability of the human genome, large amounts of data on individual genetic variations, environmental interactions, influence of lifestyle, and cutting-edge tools and technologies for big-data analysis have led to the age of personalized and precision medicine. Bringing together a global range of experts on precision medicine, this book collects previously scattered information into one concise volume which covers the most important developments so far in precision medicine and also suggests the most likely avenues for future development. The book includes clinical information, informatics, public policy implications, and information on case studies. It is a useful reference and background work for students, researchers, and clinicians working in the biomedical and medical fields, as well as policymakers in the health sciences. Provides an overview of the growing field of precision medicine Contains chapters from geographically diverse experts in their field Explores important aspects of precision medicine, including applications, ethics, and development

Medical Data Sharing  Harmonization and Analytics Book
Score: 5
From 2 Ratings

Medical Data Sharing Harmonization and Analytics


  • Author : Vasileios Pezoulas
  • Publisher : Academic Press
  • Release Date : 2020-01-05
  • Genre: Science
  • Pages : 382
  • ISBN 10 : 9780128165591

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Medical Data Sharing Harmonization and Analytics Excerpt :

Medical Data Sharing, Harmonization and Analytics serves as the basis for understanding the rapidly evolving field of medical data harmonization combined with the latest cloud infrastructures for storing the harmonized (shared) data. Chapters cover the latest research and applications on data sharing and protection in the medical domain, cohort integration through the recent advancements in data harmonization, cloud computing for storing and securing the patient data, and data analytics for effectively processing the harmonized data. Examines the unmet needs in chronic diseases as a part of medical data sharing Discusses ethical, legal and privacy issues as part of data protection Combines data harmonization and big data analytics strategies in shared medical data, along with relevant case studies in chronic diseases