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Responsible Genomic Data Sharing

Responsible Genomic Data Sharing
Challenges and Approaches

by Xiaoqian Jiang,Haixu Tang

  • Publisher : Academic Press
  • Release : 2020-03-14
  • Pages : 210
  • ISBN : 0128163399
  • 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
Challenges and Approaches

by Xiaoqian Jiang, PhD,Haixu Tang, PhD

  • Publisher : Academic Press
  • Release : 2019-07-15
  • Pages : 384
  • ISBN : 9780128161975
  • 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

Genomic Data Sharing

Genomic Data Sharing
Case Studies, Challenges, and Opportunities for Precision Medicine

by Jennifer B. Mccormick,Jyotishman Pathak

  • Publisher : Academic Press
  • Release : 2022-03-15
  • Pages : 360
  • ISBN : 9780128198032
  • Language : En, Es, Fr & De
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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

Genomic and Precision Medicine

Genomic and Precision Medicine
Foundations, Translation, and Implementation

by Geoffrey S. Ginsburg,Huntington F Willard

  • Publisher : Academic Press
  • Release : 2016-11-22
  • Pages : 398
  • ISBN : 0128006560
  • Language : En, Es, Fr & De
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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

Personal Genomes: Accessing, Sharing, and Interpretation

Personal Genomes: Accessing, Sharing, and Interpretation
A Book

by Manuel Corpas,Stephan Beck,Gustavo Glusman,Mahsa Shabani

  • Publisher : Frontiers Media SA
  • Release : 2021-08-02
  • Pages : 129
  • ISBN : 2889711277
  • Language : En, Es, Fr & De
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Introduction to Molecular Genomics

Introduction to Molecular Genomics
A Book

by Maryam Javed,Asif Nadeem, Faiz-ul Hassan

  • Publisher : Bentham Science Publishers
  • Release : 2021-11-02
  • Pages : 190
  • ISBN : 1681089262
  • Language : En, Es, Fr & De
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Introduction to Molecular Genomics introduces the college student to the fundamental concepts of molecular biology and genomics. The text puts an emphasis on important topics in the subject that contribute to the learner’s understanding. These topics include molecular genomics, biodiversity and molecular phenomenon behind evolution of species, modern molecular methods for enhanced genomics research, DNA modifications at the molecular level for transgenic animal species, the role of cell environment on the gene expression, to name a few. The book has been designed to suit the requirements of educational courses in molecular biology, genomics and biochemistry. Key features - Covers basic concepts on key topics in molecular biology and genomics - Simple easy-to-read layout - Includes references for further reading - Includes a section on ethical aspects of scientific research Introduction to Molecular Genomics is a simple primer for students in applied or advanced life science courses at undergraduate levels

Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2

Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2
Modernizing Pandemic Response Strategies

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

  • Publisher : National Academies Press
  • Release : 2020-10-29
  • Pages : 110
  • ISBN : 0309680913
  • Language : En, Es, Fr & De
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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.

Medical Data Sharing, Harmonization and Analytics

Medical Data Sharing, Harmonization and Analytics
A Book

by Vasileios Pezoulas,Themis Exarchos,Dimitrios I Fotiadis

  • Publisher : Academic Press
  • Release : 2020-01-05
  • Pages : 382
  • ISBN : 0128165596
  • Language : En, Es, Fr & De
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Medical Data Sharing, Harmonization and Analytics serves as the basis for understanding the rapidly evolving field of medical data harmonization combined with the latest cloud infrastructures for storing the harmonized (shared) data. Chapters cover the latest research and applications on data sharing and protection in the medical domain, cohort integration through the recent advancements in data harmonization, cloud computing for storing and securing the patient data, and data analytics for effectively processing the harmonized data. Examines the unmet needs in chronic diseases as a part of medical data sharing Discusses ethical, legal and privacy issues as part of data protection Combines data harmonization and big data analytics strategies in shared medical data, along with relevant case studies in chronic diseases

Progress and Challenges in Precision Medicine

Progress and Challenges in Precision Medicine
A Book

by Mukesh Verma,Debmalya Barh

  • Publisher : Academic Press
  • Release : 2016-12-22
  • Pages : 344
  • ISBN : 0128095024
  • Language : En, Es, Fr & De
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Progress and Challenges in Precision Medicine presents an insightful overview to the myriad factors of personalized and precision medicine. The availability of the human genome, large amounts of data on individual genetic variations, environmental interactions, influence of lifestyle, and cutting-edge tools and technologies for big-data analysis have led to the age of personalized and precision medicine. Bringing together a global range of experts on precision medicine, this book collects previously scattered information into one concise volume which covers the most important developments so far in precision medicine and also suggests the most likely avenues for future development. The book includes clinical information, informatics, public policy implications, and information on case studies. It is a useful reference and background work for students, researchers, and clinicians working in the biomedical and medical fields, as well as policymakers in the health sciences. Provides an overview of the growing field of precision medicine Contains chapters from geographically diverse experts in their field Explores important aspects of precision medicine, including applications, ethics, and development

Bioinformatics and Human Genomics Research

Bioinformatics and Human Genomics Research
A Book

by Diego A. Forero

  • Publisher : CRC Press
  • Release : 2021-12-23
  • Pages : 374
  • ISBN : 1000405672
  • Language : En, Es, Fr & De
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Advances in high-throughput biological methods have led to the publication of a large number of genome-wide studies in human and animal models. In this context, recent tools from bioinformatics and computational biology have been fundamental for the analysis of these genomic studies. The book Bioinformatics and Human Genomics Research provides updated and comprehensive information about multiple approaches of the application of bioinformatic tools to research in human genomics. It covers strategies analysis of genome-wide association studies, genome-wide expression studies and genome-wide DNA methylation, among other topics. It provides interesting strategies for data mining in human genomics, network analysis, prediction of binding sites for miRNAs and transcription factors, among other themes. Experts from all around the world in bioinformatics and human genomics have contributed chapters in this book. Readers will find this book as quite useful for their in silico explorations, which would contribute to a better and deeper understanding of multiple biological processes and of pathophysiology of many human diseases.

International Handbook on Responsible Innovation

International Handbook on Responsible Innovation
A Global Resource

by René von Schomberg,Jonathan Hankins

  • Publisher : Edward Elgar Publishing
  • Release : 2019
  • Pages : 592
  • ISBN : 1784718866
  • Language : En, Es, Fr & De
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The Handbook constitutes a global resource for the fast growing interdisciplinary research and policy communities addressing the challenge of driving innovation towards socially desirable outcomes. This book brings together well-known authors from the US, Europe and Asia who develop conceptual and regional perspectives on responsible innovation as well as exploring the prospects for further implementation of responsible innovation in emerging technological practices ranging from agriculture and medicine, to nanotechnology and robotics. The emphasis is on the socio-economic and normative dimensions of innovation including issues of social risk and sustainability.

Advancing Healthcare Through Personalized Medicine

Advancing Healthcare Through Personalized Medicine
A Book

by Priya Hays

  • Publisher : Springer Nature
  • Release : 2021
  • Pages : 745
  • ISBN : 3030801004
  • Language : En, Es, Fr & De
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This book provides a unique perspective on the biomedical and societal implications of personalized medicine and how it helps to mitigate he healthcare crisis and rein in ever-growing expenditure. It introduces the reader to the underlying concepts at the heart of personalized medicine. An innovative second edition, this book functions as an update to the successful first edition to include new, state-of-the-art information and advancements in the fast-paced field of personalized medicine. Chapters examine pharmacogenomics, targeted therapies, individualized diagnosis and treatment, and cancer immunotherapies. The book also features an essential discussion on how the advent of genomic technologies gives clinicians the capability to predict and diagnose disease more efficiently and offers a detailed up-to-date compilation of clinical trials in cancer leading to breakthrough therapies. The book also addresses the impact of Big Data on personalized medicine and the newfound applications of digital health and artificial intelligence. A work that advocates for a patient-centered approach, Advancing Healthcare Through Personalized Medicine, Second Edition is an invaluable text for clinicians, healthcare providers, and patients.

Public Health Genomics

Public Health Genomics
A Book

by Paul Lacaze,Gareth Baynam

  • Publisher : Frontiers Media SA
  • Release : 2019-10-17
  • Pages : 129
  • ISBN : 2889630099
  • Language : En, Es, Fr & De
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The use of human genetic data has the potential to significantly improve healthcare, however a range of scientific, ethical and practical implementation barriers remain.

Sharing Linked Data for Health Research

Sharing Linked Data for Health Research
Toward Better Decision Making

by Carolyn Adams,Judy Allen,Felicity Flack

  • Publisher : Cambridge University Press
  • Release : 2022-06-30
  • Pages : 300
  • ISBN : 1108426646
  • Language : En, Es, Fr & De
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A practical guide to reform of the regulatory environment for access to government held data for research.

Neuroethics

Neuroethics
Anticipating the Future

by Judy Illes

  • Publisher : Oxford University Press
  • Release : 2017-07-20
  • Pages : 672
  • ISBN : 0198786832
  • Language : En, Es, Fr & De
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Over the last decade, there have been unparalleled advances in our understanding of brain sciences. But with the development of tools that can manipulate brain function, there are pressing ethical implications to this newfound knowledge of how the brain works. In Neuroethics: Anticipating theFuture, a distinguished group of contributors tackle current and critical ethical questions and offer forward-looking insights. What new balances should be struck between diagnosis and prediction, or invasive and non-invasive interventions, given the rapid advances in neuroscience? Are new criteria needed for the clinical definition of death for those eligible for organ donation? As data from emerging technologies are madeavailable on public databases, what frameworks will maximize benefits while ensuring privacy of health information? These challenging questions, along with numerous other neuroethical concerns, are discussed in depth. Written by eminent scholars from diverse disciplines including neurology and neuroscience, ethics and law, public health and philosophy, this new volume on neuroethics sets out the many necessary considerations for the future. It is essential reading for the field of neuroethics, neurosciences andpsychology, and an invaluable resource for physicians in neurological medicine, academics in humanities and law, and health policy makers.

Data Matters

Data Matters
Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop

by National Academies of Sciences, Engineering, and Medicine,Policy and Global Affairs,Government-University-Industry Research Roundtable,Planning Committee for the Workshop on Ethics, Data, and International Research Collaboration in a Changing World

  • Publisher : National Academies Press
  • Release : 2019-01-28
  • Pages : 102
  • ISBN : 030948247X
  • Language : En, Es, Fr & De
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In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.

Pediatric Biomedical Informatics

Pediatric Biomedical Informatics
Computer Applications in Pediatric Research

by John J. Hutton

  • Publisher : Springer
  • Release : 2016-10-08
  • Pages : 450
  • ISBN : 9811011044
  • Language : En, Es, Fr & De
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The book describes the core resources in informatics necessary to support biomedical research programs and how these can best be integrated with hospital systems to receive clinical information that is necessary to conduct translational research. The focus is on the authors’ recent practical experiences in establishing an informatics infrastructure in a large research-intensive children’s hospital. This book is intended for translational researchers and informaticians in pediatrics, but can also serve as a guide to all institutions facing the challenges of developing and strengthening informatics support for biomedical research. The first section of the book discusses important technical challenges underlying computer-based pediatric research, while subsequent sections discuss informatics applications that support biobanking and a broad range of research programs. Pediatric Biomedical Informatics provides practical insights into the design, implementation, and utilization of informatics infrastructures to optimize care and research to benefit children.

Textbook of Personalized Medicine

Textbook of Personalized Medicine
A Book

by Kewal K. Jain

  • Publisher : Humana Press
  • Release : 2015-03-17
  • Pages : 732
  • ISBN : 1493925539
  • Language : En, Es, Fr & De
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Advances in the technology used in personalized medicine and increased applications for clinical use have created a need for this expansion and revision of Kewal K. Jain’s Textbook of Personalized Medicine. As the first definitive work on this topic, this book reviews the fundamentals and development of personalized medicine and subsequent adoptions of the concepts by the biopharmaceutical industry and the medical profession. It also discusses examples of applications in key therapeutic areas, as well as ethical and regulatory issues, providing a concise and comprehensive source of reference for those involved in healthcare management, planning and politics. Algorithms are included as a guide to those involved in the management of important diseases where decision-making is involved due to the multiple choices available. Textbook of Personalized Medicine, Second Edition will serve as a convenient source of information for physicians, scientists, decision makers in the biopharmaceutical and healthcare industries and interested members of the public.

Law and Legacy in Medical Jurisprudence

Law and Legacy in Medical Jurisprudence
Essays in Honour of Graeme Laurie

by Edward S. Dove,Niamh Nic Shuibhne

  • Publisher : Cambridge University Press
  • Release : 2022-03-10
  • Pages : 129
  • ISBN : 1108905161
  • Language : En, Es, Fr & De
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Graeme Laurie stepped down from the Chair in Medical Jurisprudence at the University of Edinburgh in 2019. This edited collection pays tribute to his extraordinary contributions to the field. Graeme often spoke about the importance of 'legacy' in academic work and forged a remarkable intellectual legacy of his own, notably through his work on genetic privacy, human tissue and information governance, and the regulatory salience of the concept of liminality. The essays in this volume animate the concept of legacy to analyse the study and practice of medical jurisprudence. In this light, legacy reveals characteristics of both benefit and burden, as both an encumbrance to and facilitator of the development of law, policy and regulation. The contributions reconcile the ideas of legacy and responsiveness and show that both dimensions are critical to achieve and sustain the health of medical jurisprudence itself as a dynamic, interdisciplinary and policy-engaged field of thinking.

Reciprocity in Population Biobanks

Reciprocity in Population Biobanks
Relational Autonomy and the Duty to Inform in the Genomic Era

by Ma’n H. Zawati

  • Publisher : Academic Press
  • Release : 2021-09-22
  • Pages : 202
  • ISBN : 0323913482
  • Language : En, Es, Fr & De
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Reciprocity in Population Biobanks: Relational Autonomy and the Duty to Inform in the Genomic Era begins by discussing how current judicial interpretation keeps standard of disclosure at the core of genomic research. The book then outlines multiple limitations individualistic autonomy faces in the context of gene and population biobanks, including an analysis of the complexities of benefit considerations in the research setting. Second, the book explores how individualistic autonomy fails to acknowledge the multilateral relationships implicated in genomic research, including those that affect the broader research community, research participants’ families, and the general public. In carrying out this analysis, this book pays special attention to alternative approaches and ways researchers, public health officials, and judicial bodies might interact in years to come. In other words, implementing an understanding of relational autonomy that acknowledges and sustains the multilateral relationships found in genomic research without compromising the rights of participants. In short, this book proposes a reconceived duty to inform for researchers and a new standard of disclosure that is more meaningful and impactful for research participants and researchers. Examines the limitations individualistic autonomy faces in the context of gene and population biobanks Proposes a reconceived duty to inform for researchers and a new standard of disclosure more meaningful to genomic research participants Suggests ways researchers, public health officials, and judicial bodies might interact to drive genomic research while still protecting research participants