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
Author: Katherine L. Kwong
Publsiher: Unknown
Total Pages: 41
Release: 2014
ISBN 10: 1928374650XXX
ISBN 13: OCLC:896967291
Language: EN, FR, DE, ES & NL

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

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.

Human Genome Informatics

Human Genome Informatics
Author: Christophe Lambert,Darrol Baker,George P. Patrinos
Publsiher: Academic Press
Total Pages: 314
Release: 2018-08-02
ISBN 10: 0128134313
ISBN 13: 9780128134313
Language: EN, FR, DE, ES & NL

Human Genome Informatics Book Review:

Human Genome Informatics: Translating Genes into Health examines the most commonly used electronic tools for translating genomic information into clinically meaningful formats. By analyzing and comparing interpretation methods of whole genome data, the book discusses the possibilities of their application in genomic and translational medicine. Topics such as electronic decision-making tools, translation algorithms, interpretation and translation of whole genome data for rare diseases are thoroughly explored. In addition, discussions of current human genome databases and the possibilities of big data in genomic medicine are presented. With an updated approach on recent techniques and current human genomic databases, the book is a valuable source for students and researchers in genome and medical informatics. It is also ideal for workers in the bioinformatics industry who are interested in recent developments in the field. Provides an overview of the most commonly used electronic tools to translate genomic information Brings an update on the existing human genomic databases that directly impact genome interpretation Summarizes and comparatively analyzes interpretation methods of whole genome data and their application in genomic medicine

Personal Genomes Accessing Sharing and Interpretation

Personal Genomes  Accessing  Sharing  and Interpretation
Author: Manuel Corpas,Stephan Beck,Gustavo Glusman,Mahsa Shabani
Publsiher: Frontiers Media SA
Total Pages: 135
Release: 2021-08-02
ISBN 10: 2889711277
ISBN 13: 9782889711277
Language: EN, FR, DE, ES & NL

Personal Genomes Accessing Sharing and Interpretation Book Review:

Sharing Clinical Trial Data

Sharing Clinical Trial Data
Author: Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data
Publsiher: National Academies Press
Total Pages: 304
Release: 2015-04-20
ISBN 10: 0309316324
ISBN 13: 9780309316323
Language: EN, FR, DE, ES & NL

Sharing Clinical Trial Data Book Review:

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.

Collaborative Genomics Projects A Comprehensive Guide

Collaborative Genomics Projects  A Comprehensive Guide
Author: Margi Sheth,Julia Zhang,Jean C Zenklusen
Publsiher: Academic Press
Total Pages: 142
Release: 2016-02-24
ISBN 10: 0128023686
ISBN 13: 9780128023686
Language: EN, FR, DE, ES & NL

Collaborative Genomics Projects A Comprehensive Guide Book Review:

Collaborative Genomics Projects: A Comprehensive Guide contains operational procedures, policy considerations, and the many lessons learned by The Cancer Genome Atlas Project. This book guides the reader through methods in patient sample acquisition, the establishment of data generation and analysis pipelines, data storage and dissemination, quality control, auditing, and reporting. This book is essential for those looking to set up or collaborate within a large-scale genomics research project. All authors are contributors to The Cancer Genome Atlas (TCGA) Program, a NIH- funded effort to generate a comprehensive catalog of genomic alterations in more than 35 cancer types. As the cost of genomic sequencing is decreasing, more and more researchers are leveraging genomic data to inform the biology of disease. The amount of genomic data generated is growing exponentially, and protocols need to be established for the long-term storage, dissemination, and regulation of this data for research. The book's authors create a complete handbook on the management of research projects involving genomic data as learned through the evolution of the TCGA program, a project that was primarily carried out in the US, but whose impact and lessons learned can be applied to international audiences. Establishes a framework for managing large-scale genomic research projects involving multiple collaborators Describes lessons learned through TCGA to prepare for potential roadblocks Evaluates policy considerations that are needed to avoid pitfalls Recommends strategies to make project management more efficient

The Genome War

The Genome War
Author: James Shreeve
Publsiher: Ballantine Books
Total Pages: 416
Release: 2007-12-18
ISBN 10: 0307417069
ISBN 13: 9780307417060
Language: EN, FR, DE, ES & NL

The Genome War Book Review:

The long-awaited story of the science, the business, the politics, the intrigue behind the scenes of the most ferocious competition in the history of modern science—the race to map the human genome. On May 10, 1998, biologist Craig Venter, director of the Institute for Genomic Research, announced that he was forming a private company that within three years would unravel the complete genetic code of human life—seven years before the projected finish of the U.S. government’s Human Genome Project. Venter hoped that by decoding the genome ahead of schedule, he would speed up the pace of biomedical research and save the lives of thousands of people. He also hoped to become very famous and very rich. Calling his company Celera (from the Latin for “speed”), he assembled a small group of scientists in an empty building in Rockville, Maryland, and set to work. At the same time, the leaders of the government program, under the direction of Francis Collins, head of the National Human Genome Research Institute at the National Institutes of Health, began to mobilize an unexpectedly unified effort to beat Venter to the prize—knowledge that had the potential to revolutionize medicine and society. The stage was set for one of the most thrilling—and important—dramas in the history of science. The Genome War is the definitive account of that drama—the race for the greatest prize biology has had to offer, told by a writer with exclusive access to Venter’s operation from start to finish. It is also the story of how one man’s ambition created a scientific Camelot where, for a moment, it seemed that the competing interests of pure science and commercial profit might be gloriously reconciled—and the national repercussions that resulted when that dream went awry.

Genetic Variation

Genetic Variation
Author: Michael R. Barnes,Gerome Breen
Publsiher: Humana Press
Total Pages: 388
Release: 2014-10-20
ISBN 10: 9781627038263
ISBN 13: 1627038264
Language: EN, FR, DE, ES & NL

Genetic Variation Book Review:

“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.

Rare Diseases

Rare Diseases
Author: Zhan He Wu
Publsiher: BoD – Books on Demand
Total Pages: 248
Release: 2020-03-25
ISBN 10: 1838800239
ISBN 13: 9781838800239
Language: EN, FR, DE, ES & NL

Rare Diseases Book Review:

Rare diseases are a group of genetic disorders occurring in a small percentage of the population with the conditions being chronic but incurable. Approximately 7000 to 8000 different types have been identified and about 350 million people globally are affected in childhood and adulthood, resulting in enormous physical, mental, and psychological suffering and financial burden. It is imperative for medical scientists, clinicians, communities, and societies to ensure appropriate care is applied to ease the suffering of such patients. The extraordinary and unprecedented hallmark in the field of rare diseases has revolutionized modern human medicine with exciting and advancing developments of the genomic era over the last two decades. Patients with rare diseases have been receiving increasing benefits in care and life quality improvements than ever before. This book intends to share and exchange the advancing knowledge and experiences from the authors, who have the necessary expertise within the various topics and subjects in the research, diagnosis, and management of rare diseases. It is hoped they are able to provide further benefits to patients and families with the development of early and accurate diagnosis and effective therapies.

Genomics in the Cloud

Genomics in the Cloud
Author: Geraldine A. Van der Auwera,Brian D. O'Connor
Publsiher: O'Reilly Media
Total Pages: 496
Release: 2020-04-02
ISBN 10: 1491975164
ISBN 13: 9781491975169
Language: EN, FR, DE, ES & NL

Genomics in the Cloud Book Review:

Data in the genomics field is booming. In just a few years, organizations such as the National Institutes of Health (NIH) will host 50+ petabytes—or over 50 million gigabytes—of genomic data, and they’re turning to cloud infrastructure to make that data available to the research community. How do you adapt analysis tools and protocols to access and analyze that volume of data in the cloud? With this practical book, researchers will learn how to work with genomics algorithms using open source tools including the Genome Analysis Toolkit (GATK), Docker, WDL, and Terra. Geraldine Van der Auwera, longtime custodian of the GATK user community, and Brian O’Connor of the UC Santa Cruz Genomics Institute, guide you through the process. You’ll learn by working with real data and genomics algorithms from the field. This book covers: Essential genomics and computing technology background Basic cloud computing operations Getting started with GATK, plus three major GATK Best Practices pipelines Automating analysis with scripted workflows using WDL and Cromwell Scaling up workflow execution in the cloud, including parallelization and cost optimization Interactive analysis in the cloud using Jupyter notebooks Secure collaboration and computational reproducibility using Terra

Genomics of Disease

Genomics of Disease
Author: J.P. Gustafson,J. Tayler,G. Stacey
Publsiher: Springer Science & Business Media
Total Pages: 222
Release: 2008-02-12
ISBN 10: 0387767231
ISBN 13: 9780387767239
Language: EN, FR, DE, ES & NL

Genomics of Disease Book Review:

This title develops from the 24th Stadler symposium. It explores the general theme "GENOME EXPLOITATION: Data Mining the Genomes". The idea behind the theme is to discuss and illustrate how scientists are going to characterize and make use of the massive amount of information being accumulated about plant and animal genomes. The book presents a state-of-the-art picture on mining the Genome databases. Its chapters are authored by key stars in the field.

Uneven Ground

Uneven Ground
Author: David Eugene Wilkins,K. Tsianina Lomawaima
Publsiher: University of Oklahoma Press
Total Pages: 326
Release: 2001
ISBN 10: 9780806133959
ISBN 13: 0806133953
Language: EN, FR, DE, ES & NL

Uneven Ground Book Review:

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.

Managing Health in the Genomic Era

Managing Health in the Genomic Era
Author: Vincent Henrich,Lori A. Orlando,Brian H. Shirts
Publsiher: Academic Press
Total Pages: 238
Release: 2020-06-27
ISBN 10: 0128160160
ISBN 13: 9780128160169
Language: EN, FR, DE, ES & NL

Managing Health in the Genomic Era Book Review:

In Managing Health in the Genomic Era: A Guide to Family Health History and Disease Risk, Drs. Vincent C. Henrich, Lori A. Orlando, and Brian H. Shirts discuss the practical considerations surrounding the use of genomic and genetic tests to manage patient health, to provide adult disease risk assessment, to improve diagnosis, and to support effective interventions and treatment. In 10 chapters, evidence-based information and case studies are described and examine the central place of family health history (FHH) in genomic medicine, tools and strategies for compiling and analyzing family health history, how to identify existing and novel genetic markers, how to identify lineage specific (or rare) variants within families, and how to find effective interventions based on genetic testing results and FHH. Factors that influence clinical practice, including gene-environment interactions, FHH social networking, direct to consumer (DTC) genetic testing and data sharing, algorithms for analyzing genetic data, and patient counseling are discussed from the standpoint of clinical practice. Here, frontline healthcare providers will discover succinct commentary and key examples to assist with their local needs. Relevant principles of genetic biology and inheritance are explored and guidance on available support networks and online resources is also provided Presents a practical, accessible resource for primary care providers, allied health professionals, pharmacologists, public health professionals, students and clinical researchers Addresses genetic and genomic approaches in managing patient health, conducting and analyzing family health histories, and assessing adult disease risk Features an expert author team with direct experience integrating genetics and genomics in primary care and family medicine settings Examines the attributes and limitations of family health history, genetic testing, and genomic testing in clinical practice Includes detailed explanations following practice-based examples

Responsible Genomic Data Sharing

Responsible Genomic Data Sharing
Author: Xiaoqian Jiang,Haixu Tang
Publsiher: Academic Press
Total Pages: 210
Release: 2020-03-14
ISBN 10: 0128163399
ISBN 13: 9780128163399
Language: EN, FR, DE, ES & NL

Responsible Genomic Data Sharing Book Review:

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

Medical and Health Genomics

Medical and Health Genomics
Author: Dhavendra Kumar,Stylianos Antonarakis
Publsiher: Academic Press
Total Pages: 358
Release: 2016-06-04
ISBN 10: 0127999221
ISBN 13: 9780127999227
Language: EN, FR, DE, ES & NL

Medical and Health Genomics Book Review:

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

Additional Protocol to the Convention on Human Rights and Biomedicine Concerning Biomedical Research

Additional Protocol to the Convention on Human Rights and Biomedicine  Concerning Biomedical Research
Author: Council of Europe
Publsiher: Council of Europe
Total Pages: 26
Release: 2005-01-01
ISBN 10: 9789287156990
ISBN 13: 9287156999
Language: EN, FR, DE, ES & NL

Additional Protocol to the Convention on Human Rights and Biomedicine Concerning Biomedical Research Book Review:

This protocol covers the full range of research activities in the health field that involve interventions on human beings. It aims to protect the dignity and identity of everyone involved, without discrimination.

Anonymizing Health Data

Anonymizing Health Data
Author: Khaled El Emam,Luk Arbuckle
Publsiher: "O'Reilly Media, Inc."
Total Pages: 228
Release: 2013-12-11
ISBN 10: 1449363032
ISBN 13: 9781449363031
Language: EN, FR, DE, ES & NL

Anonymizing Health Data Book Review:

Updated as of August 2014, this practical book will demonstrate proven methods for anonymizing health data to help your organization share meaningful datasets, without exposing patient identity. Leading experts Khaled El Emam and Luk Arbuckle walk you through a risk-based methodology, using case studies from their efforts to de-identify hundreds of datasets. Clinical data is valuable for research and other types of analytics, but making it anonymous without compromising data quality is tricky. This book demonstrates techniques for handling different data types, based on the authors’ experiences with a maternal-child registry, inpatient discharge abstracts, health insurance claims, electronic medical record databases, and the World Trade Center disaster registry, among others. Understand different methods for working with cross-sectional and longitudinal datasets Assess the risk of adversaries who attempt to re-identify patients in anonymized datasets Reduce the size and complexity of massive datasets without losing key information or jeopardizing privacy Use methods to anonymize unstructured free-form text data Minimize the risks inherent in geospatial data, without omitting critical location-based health information Look at ways to anonymize coding information in health data Learn the challenge of anonymously linking related datasets

Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2

Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2
Author: National Academies of Sciences, Engineering, and Medicine,Division on Earth and Life Studies,Board on Life Sciences,Health and Medicine Division,Board on Health Sciences Policy,Committee on Data Needs to Monitor the Evolution of SARS-CoV-2
Publsiher: National Academies Press
Total Pages: 110
Release: 2020-09-29
ISBN 10: 0309680948
ISBN 13: 9780309680943
Language: EN, FR, DE, ES & NL

Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2 Book Review:

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.

Sharing Research Data to Improve Public Health in Africa

Sharing Research Data to Improve Public Health in Africa
Author: National Academies of Sciences, Engineering, and Medicine,Division of Behavioral and Social Sciences and Education,Committee on Population
Publsiher: National Academies Press
Total Pages: 102
Release: 2015-09-18
ISBN 10: 0309378125
ISBN 13: 9780309378123
Language: EN, FR, DE, ES & NL

Sharing Research Data to Improve Public Health in Africa Book Review:

Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.

Genomic Citizenship

Genomic Citizenship
Author: Ian McGonigle
Publsiher: MIT Press
Total Pages: 220
Release: 2021-08-24
ISBN 10: 0262542943
ISBN 13: 9780262542944
Language: EN, FR, DE, ES & NL

Genomic Citizenship Book Review:

An anthropological study based on ethnographic work in Israel and Qatar explores the relationship between science, particularly genetics, and national identity. Based on ethnographic work in Israel and Qatar, two small Middle Eastern ethnonations with significant biomedical resources, Genomic Citizenship explores the relationship between science and identity. Ian McGonigle, originally trained as a biochemist, draws on anthropological theory, STS, intellectual history, critical theory, Middle Eastern studies, cultural studies, and critical legal studies. He connects biomedical research on ethnic populations to the political, economic, legal, and historical context of the state; to global trends in genetic medicine; and to the politics of identity in the context of global biomedical research. Genomic Citizenship is more an anthropology of scientific objects than an anthropology of scientists or an ethnography of the laboratory. McGonigle bases his untraditional project on traditional anthropological methods, including participant observation. Some of the most persuasive data in the book are from public records, legal and historical sources, published scientific papers, institutional reports, websites, and brochures. McGonigle discusses biological understandings of Jewishness, especially in relation to the intellectual history of Zionism and Jewish political thought, and considers the possibility of a novel application of genetics in assigning Israeli citizenship. He also describes developments in genetic medicine in Qatar and analyzes the Qatari Biobank in the context of Qatari nationalism and state-building projects. Considering possible consequences of findings on the diverse origins of the Qatari population for tribal identities, he argues that the nation cannot be defined as either a purely natural or biological entity. Rather, it is reified, reinscribed, and refracted through genomic research and discourse.

Sharing Publication Related Data and Materials

Sharing Publication Related Data and Materials
Author: National Research Council,Division on Earth and Life Studies,Board on Life Sciences,Committee on Responsibilities of Authorship in the Biological Sciences
Publsiher: National Academies Press
Total Pages: 120
Release: 2003-04-17
ISBN 10: 0309168503
ISBN 13: 9780309168502
Language: EN, FR, DE, ES & NL

Sharing Publication Related Data and Materials Book Review:

Biologists communicate to the research community and document their scientific accomplishments by publishing in scholarly journals. This report explores the responsibilities of authors to share data, software, and materials related to their publications. In addition to describing the principles that support community standards for sharing different kinds of data and materials, the report makes recommendations for ways to facilitate sharing in the future.