Genomic Data Sharing

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  • Publisher : Academic Press
  • Release : 01 March 2022
  • ISBN : 9780128198049
  • Page : 360 pages
  • Rating : 4.5/5 from 103 voters

Genomic Data Sharing Book PDF summary

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

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Genomic Data Sharing

Genomic Data Sharing
  • Author : Jennifer B. Mccormick,Jyotishman Pathak
  • Publisher : Academic Press
  • Release Date : 2022-03-01
  • ISBN : 9780128198049
DOWNLOAD BOOKGenomic Data Sharing

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

Responsible Genomic Data Sharing

Responsible Genomic Data Sharing
  • Author : Xiaoqian Jiang,Haixu Tang
  • Publisher : Academic Press
  • Release Date : 2020-03-14
  • ISBN : 9780128163399
DOWNLOAD BOOKResponsible Genomic Data Sharing

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

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
  • Publisher : National Academies Press
  • Release Date : 2015-04-20
  • ISBN : 9780309316323
DOWNLOAD BOOKSharing Clinical Trial Data

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

Reaping the Benefits of Genomic and Proteomic Research

Reaping the Benefits of Genomic and Proteomic Research
  • Author : National Research Council,Policy and Global Affairs,Committee on Science, Technology, and Law,Board on Science, Technology, and Economic Policy,Committee on Intellectual Property Rights in Genomic and Protein Research and Innovation
  • Publisher : National Academies Press
  • Release Date : 2006-03-09
  • ISBN : 0309164885
DOWNLOAD BOOKReaping the Benefits of Genomic and Proteomic Research

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

Uneven Ground

Uneven Ground
  • Author : David Eugene Wilkins,K. Tsianina Lomawaima
  • Publisher : University of Oklahoma Press
  • Release Date : 2001
  • ISBN : 0806133953
DOWNLOAD BOOKUneven Ground

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

Genetic Variation

Genetic Variation
  • Author : Michael R. Barnes,Gerome Breen
  • Publisher : Humana Press
  • Release Date : 2014-10-20
  • ISBN : 1627038264
DOWNLOAD BOOKGenetic Variation

“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

Genomics in the Cloud

Genomics in the Cloud
  • Author : Geraldine A. Van der Auwera,Brian D. O'Connor
  • Publisher : O'Reilly Media
  • Release Date : 2020-04-02
  • ISBN : 9781491975169
DOWNLOAD BOOKGenomics in the Cloud

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

Genomics-Enabled Learning Health Care Systems

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
  • Release Date : 2015-07-08
  • ISBN : 9780309371155
DOWNLOAD BOOKGenomics-Enabled Learning Health Care Systems

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

Implementing and Evaluating Genomic Screening Programs in Health Care Systems

Implementing and Evaluating Genomic Screening Programs in Health Care Systems
  • Author : National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Roundtable on Genomics and Precision Health
  • Publisher : National Academies Press
  • Release Date : 2018-06-16
  • ISBN : 9780309473415
DOWNLOAD BOOKImplementing and Evaluating Genomic Screening Programs in Health Care Systems

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,

Genomics of Disease

Genomics of Disease
  • Author : J.P. Gustafson,J. Tayler,G. Stacey
  • Publisher : Springer Science & Business Media
  • Release Date : 2008-02-12
  • ISBN : 9780387767239
DOWNLOAD BOOKGenomics of Disease

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.

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
  • Publisher : Unknown
  • Release Date : 2014
  • ISBN : OCLC:896967291
DOWNLOAD BOOKComparing Genomic Data Sharing Policies from the National Institutes of Health, Global Alliance, and Reg4All

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.

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
  • Publisher : National Academies Press
  • Release Date : 2020-10-29
  • ISBN : 9780309680912
DOWNLOAD BOOKGenomic Epidemiology Data Infrastructure Needs for SARS-CoV-2

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

Toward Precision Medicine

Toward Precision Medicine
  • Author : National Research Council,Division on Earth and Life Studies,Board on Life Sciences,Committee on A Framework for Developing a New Taxonomy of Disease
  • Publisher : National Academies Press
  • Release Date : 2012-01-16
  • ISBN : 9780309222228
DOWNLOAD BOOKToward Precision Medicine

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

Anonymizing Health Data

Anonymizing Health Data
  • Author : Khaled El Emam,Luk Arbuckle
  • Publisher : "O'Reilly Media, Inc."
  • Release Date : 2013-12-11
  • ISBN : 9781449363031
DOWNLOAD BOOKAnonymizing Health Data

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

Rare Diseases

Rare Diseases
  • Author : Zhan He Wu
  • Publisher : BoD – Books on Demand
  • Release Date : 2020-03-25
  • ISBN : 9781838800239
DOWNLOAD BOOKRare Diseases

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