Genomic Data Sharing Book

Genomic Data Sharing


  • Author : Jennifer B. Mccormick
  • Publisher : Elsevier
  • Release Date : 2022-11-15
  • Genre: Medical
  • Pages : 230
  • ISBN 10 : 9780128198032

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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

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

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.

Human Genome Informatics Book

Human Genome Informatics


  • Author : Christophe Lambert
  • Publisher : Academic Press
  • Release Date : 2018-08-02
  • Genre: Medical
  • Pages : 314
  • ISBN 10 : 9780128134313

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Human Genome Informatics Excerpt :

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

Genomics in the Cloud Book

Genomics in the Cloud


  • Author : Geraldine A. Van der Auwera
  • Publisher : O'Reilly Media
  • Release Date : 2020-04-02
  • Genre: Computers
  • Pages : 496
  • ISBN 10 : 9781491975169

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Genomics in the Cloud Excerpt :

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 Enabled Learning Health Care Systems Book

Genomics Enabled Learning Health Care Systems


  • Author : Institute of Medicine
  • Publisher : National Academies Press
  • Release Date : 2015-07-08
  • Genre: Medical
  • Pages : 116
  • ISBN 10 : 9780309371155

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Genomics Enabled Learning Health Care Systems Excerpt :

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.

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.

Reaping the Benefits of Genomic and Proteomic Research Book

Reaping the Benefits of Genomic and Proteomic Research


  • Author : National Research Council
  • Publisher : National Academies Press
  • Release Date : 2006-03-09
  • Genre: Science
  • Pages : 188
  • ISBN 10 : 0309164885

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Reaping the Benefits of Genomic and Proteomic Research Excerpt :

The patenting and licensing of human genetic material and proteins represents an extension of intellectual property (IP) rights to naturally occurring biological material and scientific information, much of it well upstream of drugs and other disease therapies. This report concludes that IP restrictions rarely impose significant burdens on biomedical research, but there are reasons to be apprehensive about their future impact on scientific advances in this area. The report recommends 13 actions that policy-makers, courts, universities, and health and patent officials should take to prevent the increasingly complex web of IP protections from getting in the way of potential breakthroughs in genomic and proteomic research. It endorses the National Institutes of Health guidelines for technology licensing, data sharing, and research material exchanges and says that oversight of compliance should be strengthened. It recommends enactment of a statutory exception from infringement liability for research on a patented invention and raising the bar somewhat to qualify for a patent on upstream research discoveries in biotechnology. With respect to genetic diagnostic tests to detect patient mutations associated with certain diseases, the report urges patent holders to allow others to perform the tests for purposes of verifying the results.

The  1 000 Genome Book
Score: 3
From 3 Ratings

The 1 000 Genome


  • Author : Kevin Davies
  • Publisher : Simon and Schuster
  • Release Date : 2015-08-18
  • Genre: Medical
  • Pages : 352
  • ISBN 10 : 9781416569619

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The 1 000 Genome Excerpt :

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.

Implementing and Evaluating Genomic Screening Programs in Health Care Systems Book

Implementing and Evaluating Genomic Screening Programs in Health Care Systems


  • Author : National Academies of Sciences, Engineering, and Medicine
  • Publisher : National Academies Press
  • Release Date : 2018-06-16
  • Genre: Medical
  • Pages : 151
  • ISBN 10 : 9780309473415

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Implementing and Evaluating Genomic Screening Programs in Health Care Systems Excerpt :

Genomic applications are being integrated into a broad range of clinical and research activities at health care systems across the United States. This trend can be attributed to a variety of factors, including the declining cost of genome sequencing and the potential for improving health outcomes and cutting the costs of care. The goals of these genomics-based programs may be to identify individuals with clinically actionable variants as a way of preventing disease, providing diagnoses for patients with rare diseases, and advancing research on genetic contributions to health and disease. Of particular interest are genomics- based screening programs, which will, in this publication, be clinical screening programs that examine genes or variants in unselected populations in order to identify individuals who are at an increased risk for a particular health concern (e.g., diseases, adverse drug outcomes) and who might benefit from clinical interventions. On November 1, 2017, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to explore the challenges and opportunities associated with integrating genomics-based screening programs into health care systems. This workshop was developed as a way to explore the challenges and opportunities associated with integrating genomics-based programs in health care systems in the areas of evidence collection, sustainability, data sharing, infrastructure, and equity of access. This publication summarizes the presentations and discussions from the workshop.

The Genome War Book
Score: 3.5
From 2 Ratings

The Genome War


  • Author : James Shreeve
  • Publisher : Ballantine Books
  • Release Date : 2007-12-18
  • Genre: Science
  • Pages : 416
  • ISBN 10 : 9780307417060

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The Genome War Excerpt :

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.

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.

Toward Precision Medicine Book

Toward Precision Medicine


  • Author : National Research Council
  • Publisher : National Academies Press
  • Release Date : 2012-01-16
  • Genre: Medical
  • Pages : 142
  • ISBN 10 : 9780309222228

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Toward Precision Medicine Excerpt :

Motivated by the explosion of molecular data on humans-particularly data associated with individual patients-and the sense that there are large, as-yet-untapped opportunities to use this data to improve health outcomes, Toward Precision Medicine explores the feasibility and need for "a new taxonomy of human disease based on molecular biology" and develops a potential framework for creating one. The book says that a new data network that integrates emerging research on the molecular makeup of diseases with clinical data on individual patients could drive the development of a more accurate classification of diseases and ultimately enhance diagnosis and treatment. The "new taxonomy" that emerges would define diseases by their underlying molecular causes and other factors in addition to their traditional physical signs and symptoms. The book adds that the new data network could also improve biomedical research by enabling scientists to access patients' information during treatment while still protecting their rights. This would allow the marriage of molecular research and clinical data at the point of care, as opposed to research information continuing to reside primarily in academia. Toward Precision Medicine notes that moving toward individualized medicine requires that researchers and health care providers have access to very large sets of health- and disease-related data linked to individual patients. These data are also critical for developing the information commons, the knowledge network of disease, and ultimately the new taxonomy.