Genomic Data Sharing Books

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Responsible Genomic Data Sharing


Responsible Genomic Data Sharing
  • Author : Xiaoqian Jiang
  • Publisher : Academic Press
  • Release : 2020-03-14
  • ISBN : 9780128163399
  • Language : En, Es, Fr & De
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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

Responsible Genomic Data Sharing


Responsible Genomic Data Sharing
  • Author : Xiaoqian Jiang, PhD
  • Publisher : Academic Press
  • Release : 2019-07-15
  • ISBN : 0128161973
  • Language : En, Es, Fr & De
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Recent technological advances have dramatically decreased the cost of genome sequencing, making it more affordable to collect genomic data from private citizens and patients, and subsequently employ this data to support new biomedical research and drug discovery. In Responsible Genomic Data Sharing: Challenges and Approaches international experts in genomics research, bioinformatics, and digital security 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. Fully examines policy and technical aspects of genomic data sharing in research and clinical practice Addresses privacy preserving technologies and how they can be applied to enable responsible genomic data sharing Employing illustrative case studies, analyzes emerging genomic data sharing efforts, common challenges, and lessons learned Features chapter contributions from international experts in responsible approaches to genomic data sharing

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 :
  • Release : 2014
  • ISBN : OCLC:896967291
  • Language : En, Es, Fr & De
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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.

Genomic Data Sharing


Genomic Data Sharing
  • Author : Jennifer B McCormick
  • Publisher : Academic Press
  • Release : 2020-10
  • ISBN : 0128198036
  • Language : En, Es, Fr & De
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Over the last decade increasing emphasis has been placed on biomedical data sharing, with the goal of making data sets available to a wide range of researchers. Genomic data sets are particularly vulnerable to security breaches and ethical and legal complications, and genomic data storage and access needs must comply with federal and state laws and regulations. However, it is equally important that the ethical, legal, political, and social issues (ELSI) including privacy and confidentiality, access, informed consent, and return of both individual and aggregate research results to participants are recognized and addressed. Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine provides a comprehensive overview of current and emerging issues in genomic data sharing as applied in new genomic research and precision medicine. Here, international leaders in genomic data sharing examine these issues in-depth, and offer practical case studies highlighting key successes, challenges, and opportunities. Existing genomic data sharing consortia discussed include 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 front lines, this book provides succinct overviews of ethical, legal, social, and IT challenges relevant to research employing and sharing genomic data. Clinician investigators, clinicians affiliated with academic medical centers, policymakers, and regulators will also gain insight allowing them to navigate the increasingly complex ethical, social, and clinical landscape of genomic data sharing.

The Genome War


The Genome War
  • Author : James Shreeve
  • Publisher : Ballantine Books
  • Release : 2007-12-18
  • ISBN : 9780307417060
  • Language : En, Es, Fr & De
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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.