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Responsible Genomic Data Sharing

Responsible Genomic Data Sharing Book
Author : Xiaoqian Jiang,Haixu Tang
Publisher : Academic Press
Release : 2020-03-14
ISBN : 0128163399
Language : En, Es, Fr & De

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Book Description :

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

Genomic Data Sharing

Genomic Data Sharing Book
Author : Jennifer B. Mccormick,Jyotishman Pathak
Publisher : Academic Press
Release : 2021-06-01
ISBN : 0128198044
Language : En, Es, Fr & De

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Book Description :

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

Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re use across Societies

Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re use across Societies Book
Author : OECD
Publisher : OECD Publishing
Release : 2019-11-26
ISBN : 9264660658
Language : En, Es, Fr & De

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Book Description :

This report examines the opportunities of enhancing access to and sharing of data (EASD) in the context of the growing importance of artificial intelligence and the Internet of Things. It discusses how EASD can maximise the social and economic value of data re-use and how the related risks and challenges can be addressed. It highlights the trade-offs, complementarities and possible unintended consequences of policy action – and inaction. It also provides examples of EASD approaches and policy initiatives in OECD countries and partner economies.

Genomic and Precision Medicine

Genomic and Precision Medicine Book
Author : Geoffrey S. Ginsburg,Huntington F Willard
Publisher : Academic Press
Release : 2016-11-22
ISBN : 0128006560
Language : En, Es, Fr & De

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Book Description :

Genomic and Precision Medicine: Translation and Implementation highlights the various points along the continuum from health to disease where genomic information is impacting clinical decision-making and leading to more personalization of health care. The book pinpoints the challenges, barriers, and solutions that have been, or are being, brought forward to enable translation of genome based technologies into health care. A variety of infrastructure (data systems and EMRs), policy (regulatory, reimbursement, privacy), and research (comparative effectiveness research, learning health system approaches) strategies are also discussed. Readers will find this volume to be an invaluable resource for the translational genomics and implementation science that is required to fully realize personalized health care. Provides a comprehensive volume on the translation and implementation of biology into health care provision Presents succinct commentary and key learning points that will assist readers with their local needs for translation and implementation Includes an up-to-date overview on major ‘translational events’ in genomic and personalized medicine, along with lessons learned

Medical and Health Genomics

Medical and Health Genomics Book
Author : Dhavendra Kumar,Stylianos Antonarakis
Publisher : Academic Press
Release : 2016-06-04
ISBN : 0127999221
Language : En, Es, Fr & De

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Book Description :

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

Ethical Challenges in Genomics Research

Ethical Challenges in Genomics Research Book
Author : Paula Boddington
Publisher : Springer Science & Business Media
Release : 2012-03-12
ISBN : 3642236995
Language : En, Es, Fr & De

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Book Description :

New developments in science and technology have resulted in shifting ethical challenges in many areas including in genomics research. This book enables those who are involved in genomics research, whether as researcher, participant or policy maker, to understand the ethical issues currently developing in this field and to participate actively in these important debates. A clear account is given of how science and technology are outstripping the capacity of previous ethical regulations to cope with current issues, together with practical illustrations of possible ways forward. Key ethical ideas are presented, drawing on the history of research regulation and on an account of the particular challenges arising in the field of genomics. The book uses a grounded, practical approach to explaining ethical concepts and issues which is geared to enhancing interdisciplinary dialogue. Its broad approach to ethical issues includes relevant considerations from social psychology and there is a particular emphasis on understanding the problems of ethical regulations and practice in the institutional and social context of research. A glossary and numerous text boxes explaining relevant terms and key ideas help to make the work an invaluable resource for both beginners and experts in the field.

Evaluating the Gap Between Research Ethics Review and Data Sharing in the Pediatric Infrastructure Sciences

Evaluating the Gap Between Research Ethics Review and Data Sharing in the Pediatric Infrastructure Sciences Book
Author : Vasiliki Rahimzadeh
Publisher :
Release : 2019
ISBN :
Language : En, Es, Fr & De

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Book Description :

"BACKGROUND: Clinical progress in genomics-enabled learning health systems relies on the production, use and exchange of data, including from children. The policies and practices guiding proportionate governance of such production, access and exchange are, however, markedly limited in the pediatric genomics space. The need for policy-practice coherence in genomic data sharing can be accentuated when involving children, from whom data may require special protections. Absent understanding the ethical-legal bases upon which responsible pediatric data sharing rests, present and future children may not reap the benefits of a healthcare system that continuously ‘learns’ from the production, use and exchange of their data. The purpose of this thesis is twofold: to identify the ethical, legal, social and scientific factors that enable ‘responsible’ genomic and associated clinical data sharing involving children; and to develop a policy framework guiding responsible sharing for the pediatric genomics community in Canada. METHODS: A systematic review of reasons was combined with policy Delphi methods to develop the Key Implications of Data Sharing (KIDS) framework for pediatric genomics. Thematic content, and descriptive statistical analyses were used to understand how 12 Canadian pediatricians, genomic researchers, ethicists and bioethics scholars prioritize the ethical-legal, social and scientific policy positions outlined in the KIDS framework. RESULTS: The panel reached consensus on 9 of 12 original policy positions identified in the systematic review and refined during a key informant committee meeting of international data sharing experts. Discrepant views related to informational risks, data access and oversight of anonymized versus coded genomic data were primary sources of dissention. CONCLUSION: This thesis makes two contributions to the theory and practice of responsible data sharing involving children in Canada. First, it suggests that skepticism of data anonymization drives support for more stringent access controls and oversight when data involve children. Second, greater emphasis on data accountability—coupled with data security—could serve as a more effective policy lever to preserve patient trust in data sharing given rapid progress in computation, ensuring children remain at the forefront of genomic innovation"--

Ethical Dilemmas in Genetics and Genetic Counseling

Ethical Dilemmas in Genetics and Genetic Counseling Book
Author : Janice Berliner MS, CGC
Publisher : Oxford University Press
Release : 2014-09-15
ISBN : 0190206640
Language : En, Es, Fr & De

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Book Description :

Knowledge of the genetic basis of human diseases is growing rapidly, with important implications for pre-conceptional, prenatal, and predictive testing. While new genetic testing offers better insight into the causes of and susceptibility for heritable diseases, not all inherited diseases that can be predicted on the basis of genetic information can be treated or cured. Should we test everyone who wants to know his or her genetic status, even when there are no possibilities for treatment? What is the role of the "right-not-to-know?" Do we test children for adult onset disorders because the parents just "have to know" or do we respect the children's right to choose when they are older? Do we allow commercial companies to offer genetic tests directly to consumers without the proper oversight regarding what the test results will mean? By using a creative approach that focuses on a single extended family as a case example to illustrate each chapter's key point, the authors elucidate ethical issues arising in the genetics clinic and laboratory surrounding many timely issues, including: · prenatal and pre-implantation genetic diagnosis · assisted reproductive technologies · incidental findings in genetic testing · gene patenting · testing children for adult onset disorders · direct to consumer testing Ethical Dilemmas in Genetic Counseling: Principles through Case Scenarios is essential reading for anyone interested in the ethical issues surfacing in common genetics practice. Written exclusively by genetic counselors, it makes a significant contribution to the field of ethics in genetics and thus will appeal not only to genetic counselors but to physicians, nurses, and all those concerned with bioethics and social science.

Steps Toward Large Scale Data Integration in the Sciences

Steps Toward Large Scale Data Integration in the Sciences Book
Author : National Research Council,Policy and Global Affairs,Division on Engineering and Physical Sciences,Committee on Applied and Theoretical Statistics
Publisher : National Academies Press
Release : 2010-08-01
ISBN : 0309154421
Language : En, Es, Fr & De

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Book Description :

Steps Toward Large-Scale Data Integration in the Sciences summarizes a National Research Council (NRC) workshop to identify some of the major challenges that hinder large-scale data integration in the sciences and some of the technologies that could lead to solutions. The workshop was held August 19-20, 2009, in Washington, D.C. The workshop examined a collection of scientific research domains, with application experts explaining the issues in their disciplines and current best practices. This approach allowed the participants to gain insights about both commonalities and differences in the data integration challenges facing the various communities. In addition to hearing from research domain experts, the workshop also featured experts working on the cutting edge of techniques for handling data integration problems. This provided participants with insights on the current state of the art. The goals were to identify areas in which the emerging needs of research communities are not being addressed and to point to opportunities for addressing these needs through closer engagement between the affected communities and cutting-edge computer science.

The Drama of DNA

The Drama of DNA Book
Author : Karen H. Rothenberg JD, MPA,Lynn Wein Bush PhD, MS, MA
Publisher : Oxford University Press
Release : 2014-03-14
ISBN : 0199373159
Language : En, Es, Fr & De

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Book Description :

Through the use of dramatic narratives, The Drama of DNA brings to life the complexities raised by the application of genomic technologies to health care and diagnosis. This creative, pedagogical approach shines a unique light on the ethical, psychosocial, and policy challenges that emerge as comprehensive sequencing of the human genome transitions from research to clinical medicine. Narrative genomics aims to enhance understanding of how we evaluate, process, and share genomic information, and to cultivate a deeper appreciation for difficult decisions encountered by health care professionals, bioethicists, families, and society as this technology reaches the bedside. This innovative book includes both original genomic plays and theatrical excerpts that illuminate the implications of genomic information and emerging technologies for physicians, scientists, counselors, patients, blood relatives, and society. In addition to the plays, the authors provide an analytical foundation to frame the many challenges that often arise.

Applied Genomics and Public Health

Applied Genomics and Public Health Book
Author : George P. Patrinos
Publisher : Academic Press
Release : 2019-11-13
ISBN : 0128136960
Language : En, Es, Fr & De

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Book Description :

Applied Genomics and Public Health examines the interdisciplinary and growing area of how evidence-based genomic knowledge can be applied to public health, population health, healthcare and health policies. The book gathers experts from a variety of disciplines, including life sciences, social sciences, and health care to develop a comprehensive overview of the field. In addition, the book delves into subjects such as pharmacogenomics, genethics, big data, data translation and analysis, economic evaluation, genomic awareness and education, sociology, pricing and reimbursement, policy measures and economic evaluation in genomic medicine. This book is essential reading for researchers and students exploring applications of genomics to population and public health. In addition, it is ideal for those in the biomedical sciences, medical sociologists, healthcare professionals, nurses, regulatory bodies and health economists interested in learning more about this growing field. Explores the growing application of genomics to population and public health Features internationally renowned contributors from a variety of related fields Contains chapters on important topics such as genomic data sharing, genethics and public health genomics, genomics and sociology, and regulatory aspects of genomic medicine and pharmacogenomics

The Utility of Genomic Variant Databases in Genetic Counseling

The Utility of Genomic Variant Databases in Genetic Counseling Book
Author : Colleen Ahern,Elly Brokamp
Publisher :
Release : 2016
ISBN :
Language : En, Es, Fr & De

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Book Description :

Organizations such as the American College of Medical Genetics (ACMG) and the National Society of Genetic Counselors (NSGC) are in agreement that public genomic data sharing will benefit patient care. Despite these recommendations, not all clinical laboratories share their variant data onto public databases. As the amount of genetic material being analyzed for patient care continues to increase, more variants of unknown significance (VUS) are reported as well. Genetic counselors need to properly interpret VUS results in order to aid patients in making educated health decisions. For this paper, genetic counselors were asked about genomic data sharing and how they handle VUS results for patients. While almost all genetic counselors agree that there is a need for genomic data sharing, only some took laboratories' data sharing practices into account when deciding where to order testing. Genetic counselors do not have a standard way of processing VUS results; there is little consistency to how often genetic counselors look up variants in public databases or which databases they use.

Frontiers in Polar Biology in the Genomic Era

Frontiers in Polar Biology in the Genomic Era Book
Author : National Research Council,Polar Research Board,Committee on Frontiers in Polar Biology
Publisher : National Academies Press
Release : 2003-08-08
ISBN : 0309087279
Language : En, Es, Fr & De

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Book Description :

As we enter the twenty-first century, the polar biological sciences stand well poised to address numerous important issues, many of which were unrecognized as little as 10 years ago. From the effects of global warming on polar organisms to the potential for life in subglacial Lake Vostok, the opportunities to advance our understanding of polar ecosystems are unprecedented. The era of “genome-enabled†biology is upon us, and new technologies will allow us to examine polar biological questions of unprecedented scope and to do so with extraordinary depth and precision. Frontiers in Polar Biology in the Genomic Revolution highlights research areas in polar biology that can benefit from genomic technologies and assesses the impediments to the conduct of polar genomic research. It also emphasizes the importance of ancillary technologies to the successful application of genomic technologies to polar studies. It recommends the development of a new initiative in polar genome sciences that emphasizes collaborative multidisciplinary research to facilitate genome analyses of polar organisms and coordinate research efforts.

The Biologist s Imagination

The Biologist s Imagination Book
Author : William Hoffman,Leo Furcht
Publisher : Oxford University Press
Release : 2014-05-01
ISBN : 0199361320
Language : En, Es, Fr & De

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Book Description :

Scholars and policymakers alike agree that innovation in the biosciences is key to future growth. The field continues to shift and expand, and it is certainly changing the way people live their lives in a variety of ways. With a large share of federal research dollars devoted to the biosciences, the field is just beginning to live up to its billing as a source of innovation, economic productivity and growth. Vast untapped potential to imagine and innovate exists in the biosciences given new tools now widely available. In The Biologist's Imagination, William Hoffman and Leo Furcht examine the history of innovation in the biosciences, tracing technological innovation from the late eighteenth century to the present and placing special emphasis on how and where technology evolves. Place is often key to innovation, from the early industrial age to the rise of the biotechnology industry in the second half of the twentieth century. The book uses the distinct history of bioinnovation to discuss current trends as they relate to medicine, agriculture, energy, industry, ecosystems, and climate. Fast-moving research fields like genomics, synthetic biology, stem cell research, neuroscience, bioautomation and bioprinting are accelerating these trends. Hoffman and Furcht argue that our system of bioscience innovation is itself in need of innovation. It needs to adapt to the massive changes brought about by converging technologies and the globalization of higher education, workforce skills, and entrepreneurship. The Biologist's Imagination is both a review of past models for bioscience innovation and a forward-looking, original argument for what future models should take into account.