Genomic Data Sharing

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Genomic Data Sharing

Author : Jennifer B. Mccormick,Jyotishman Pathak
Publisher : Academic Press
Page : 232 pages
File Size : 49,8 Mb
Release : 2022-11-29
Category : Medical
ISBN : 9780128198049

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Genomic Data Sharing by Jennifer B. Mccormick,Jyotishman Pathak Pdf

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

Author : Xiaoqian Jiang,Haixu Tang
Publisher : Academic Press
Page : 212 pages
File Size : 42,6 Mb
Release : 2020-03-14
Category : Science
ISBN : 9780128163399

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Responsible Genomic Data Sharing by Xiaoqian Jiang,Haixu Tang Pdf

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

Uneven Ground

Author : David Eugene Wilkins,K. Tsianina Lomawaima
Publisher : University of Oklahoma Press
Page : 340 pages
File Size : 53,5 Mb
Release : 2001
Category : Social Science
ISBN : 0806133953

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Uneven Ground by David Eugene Wilkins,K. Tsianina Lomawaima Pdf

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.

The $1,000 Genome

Author : Kevin Davies
Publisher : Simon and Schuster
Page : 352 pages
File Size : 45,7 Mb
Release : 2010-09-07
Category : Science
ISBN : 1416570187

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The $1,000 Genome by Kevin Davies Pdf

In 2000, President Bill Clinton signaled the completion of the Human Genome Project at a cost in excess of $2 billion. A decade later, the price for any of us to order our own personal genome sequence—a comprehensive map of the 3 billion letters in our DNA—is rapidly and inevitably dropping to just $1,000. Dozens of men and women—scientists, entrepreneurs, celebrities, and patients—have already been sequenced, pioneers in a bold new era of personalized genomic medicine. The $1,000 genome has long been considered the tipping point that would open the floodgates to this revolution. Do you have gene variants associated with Alzheimer’s or diabetes, heart disease or cancer? Which drugs should you consider taking for various diseases, and at what dosage? In the years to come, doctors will likely be able to tackle all of these questions—and many more—by using a computer in their offices to call up your unique genome sequence, which will become as much a part of your medical record as your blood pressure. Indeed, many experts are advocating that all newborns have a complete genome analysis done so that preventive measures and preemptive medicine can begin early in life. How has this astonishing achievement been accomplished? And what will it mean for our lives? To research the story of this unfolding revolution, critically acclaimed science writer Kevin Davies has spent the past few years traveling to the leading centers and interviewing the entrepreneurs and pioneers in the race to achieve the $1,000 genome. He vividly brings to life the extraordinary drama of this grand scientific achievement, revealing the masterful ingenuity that has transformed the process of decoding DNA and delivering the information it possesses to the public at large. Davies also profiles the future of genomic medicine and thoughtfully explores the many pressing issues raised by the tidal wave of personal genetic information. Will your privacy be protected? Will you be pressured, by insurance companies or by your employer, to get your genome sequenced? What psychological toll might there be to discovering you are at risk for certain diseases like Alzheimer’s? And will the government or the medical establishment come between you and your genome? One thing that is not in question is that we are moving swiftly into the personalized medicine era, and The $1,000 Genome is an essential guide to this brave new future.

Gene Sharing and Evolution

Author : Joram Piatigorsky
Publisher : Harvard University Press
Page : 434 pages
File Size : 53,9 Mb
Release : 2007-02-28
Category : Science
ISBN : 0674023412

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Gene Sharing and Evolution by Joram Piatigorsky Pdf

In Gene Sharing and Evolution Piatigorsky explores the generality and implications of gene sharing throughout evolution and argues that most if not all proteins perform a variety of functions in the same and in different species, and that this is a fundamental necessity for evolution.

Genomics-Enabled Learning Health Care Systems

Author : Institute of Medicine,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health
Publisher : National Academies Press
Page : 116 pages
File Size : 50,9 Mb
Release : 2015-07-08
Category : Medical
ISBN : 9780309371155

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Genomics-Enabled Learning Health Care Systems by Institute of Medicine,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health Pdf

The inclusion of genomic data in a knowledge-generating health care system infrastructure is one promising way to harness the full potential of that information to provide better patient care. In such a system, clinical practice and research influence each other with the goal of improving the efficiency and effectiveness of disease prevention, diagnosis, and treatment. To examine pragmatic approaches to incorporating genomics in learning health care systems, the Institute of Medicine Roundtable on Translating Genomic-Based Research for Health hosted a workshop which convened a variety of stakeholder groups, including commercial developers, health information technology professionals, clinical providers, academic researchers, patient groups, and government and health system representatives, to present their perspectives and participate in discussions on maximizing the value that can be obtained from genomic information. The workshop examined how a variety of systems are capturing and making use of genomic data to generate knowledge for advancing health care in the 21st century. It also sought to evaluate the challenges, opportunities, and best practices for capturing or using genomic information in knowledge-generating health care systems. Genomics-Enabled Learning Health Care Systems summarizes the presentations and discussion of the workshop.

Sharing Clinical Trial Data

Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data
Publisher : National Academies Press
Page : 304 pages
File Size : 43,7 Mb
Release : 2015-04-20
Category : Medical
ISBN : 9780309316323

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Sharing Clinical Trial Data by Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data Pdf

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.

Human Genome Informatics

Author : Christophe Lambert,Darrol Baker,George P. Patrinos
Publisher : Academic Press
Page : 314 pages
File Size : 48,8 Mb
Release : 2018-08-02
Category : Medical
ISBN : 9780128134313

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Human Genome Informatics by Christophe Lambert,Darrol Baker,George P. Patrinos Pdf

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

Genetic Variation

Author : Michael R. Barnes,Gerome Breen
Publisher : Humana Press
Page : 0 pages
File Size : 47,6 Mb
Release : 2014-10-20
Category : Science
ISBN : 1627038264

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Genetic Variation by Michael R. Barnes,Gerome Breen Pdf

“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.

The Genome War

Author : James Shreeve
Publisher : Ballantine Books
Page : 418 pages
File Size : 51,8 Mb
Release : 2007-12-18
Category : Science
ISBN : 9780307417060

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The Genome War by James Shreeve Pdf

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.

Genomics in the Cloud

Author : Geraldine A. Van der Auwera,Brian D. O'Connor
Publisher : O'Reilly Media
Page : 496 pages
File Size : 40,9 Mb
Release : 2020-04-02
Category : Computers
ISBN : 9781491975169

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Genomics in the Cloud by Geraldine A. Van der Auwera,Brian D. O'Connor Pdf

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

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
Publisher : National Academies Press
Page : 111 pages
File Size : 49,5 Mb
Release : 2020-09-29
Category : Medical
ISBN : 9780309680943

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Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2 by 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 Pdf

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.

Genetic Inventions, Intellectual Property Rights and Licensing Practices Evidence and Policies

Author : OECD
Publisher : OECD Publishing
Page : 112 pages
File Size : 45,7 Mb
Release : 2003-01-21
Category : Electronic
ISBN : 9789264034730

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Genetic Inventions, Intellectual Property Rights and Licensing Practices Evidence and Policies by OECD Pdf

Few topics in the life sciences today provoke as much debate as the availability of patent protection on "genetic inventions". Some hold that protection is essential to encourage innovation and development of new products. Others argue that patents ...

Genomics Data Sharing Complete Self-Assessment Guide

Author : Gerardus Blokdyk
Publisher : Unknown
Page : 0 pages
File Size : 43,9 Mb
Release : 2018
Category : Electronic books
ISBN : 0655131388

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Genomics Data Sharing Complete Self-Assessment Guide by Gerardus Blokdyk Pdf

Genomics data sharing Complete Self-Assessment Guide.

Evaluating Human Genetic Diversity

Author : National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Committee on Human Genome Diversity
Publisher : National Academies Press
Page : 101 pages
File Size : 47,7 Mb
Release : 1998-01-19
Category : Science
ISBN : 9780309184748

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Evaluating Human Genetic Diversity by National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Committee on Human Genome Diversity Pdf

This book assesses the scientific value and merit of research on human genetic differencesâ€"including a collection of DNA samples that represents the whole of human genetic diversityâ€"and the ethical, organizational, and policy issues surrounding such research. Evaluating Human Genetic Diversity discusses the potential uses of such collection, such as providing insight into human evolution and origins and serving as a springboard for important medical research. It also addresses issues of confidentiality and individual privacy for participants in genetic diversity research studies.