Guidance For Human Genome Data Collection Access Use And Sharing
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Guidance For Human Genome Data Collection Access Use And Sharing
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Author : World Health Organization
language : en
Publisher: World Health Organization
Release Date : 2024-11-20
Guidance For Human Genome Data Collection Access Use And Sharing written by World Health Organization and has been published by World Health Organization this book supported file pdf, txt, epub, kindle and other format this book has been release on 2024-11-20 with Medical categories.
This guidance document sets out principles for human genome data collection, access, use and sharing.
Responsible Genomic Data Sharing
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Author : Xiaoqian Jiang
language : en
Publisher: Academic Press
Release Date : 2020-03-17
Responsible Genomic Data Sharing written by Xiaoqian Jiang and has been published by Academic Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2020-03-17 with Science categories.
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.
Human Genome Editing
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Author : National Academies of Sciences, Engineering, and Medicine
language : en
Publisher: National Academies Press
Release Date : 2017-08-13
Human Genome Editing written by National Academies of Sciences, Engineering, and Medicine and has been published by National Academies Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2017-08-13 with Medical categories.
Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.
Heritable Human Genome Editing
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Author : The Royal Society
language : en
Publisher: National Academies Press
Release Date : 2021-01-16
Heritable Human Genome Editing written by The Royal Society and has been published by National Academies Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2021-01-16 with Medical categories.
Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.
Who Clinical Consortium On Healthy Ageing 2024
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Author : World Health Organization
language : en
Publisher: World Health Organization
Release Date : 2025-05-23
Who Clinical Consortium On Healthy Ageing 2024 written by World Health Organization and has been published by World Health Organization this book supported file pdf, txt, epub, kindle and other format this book has been release on 2025-05-23 with Medical categories.
The 2024 meeting of the WHO Clinical Consortium on Healthy Ageing (CCHA) was the group’s 10th gathering, held virtually on November 5-7, 2024. The meeting was structured around six panels, with a series of technical presentations, plenary discussions and group work, and a final session outlining the work for 2025.
Sharing Clinical Trial Data
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Author : Institute of Medicine
language : en
Publisher: National Academies Press
Release Date : 2015-04-20
Sharing Clinical Trial Data written by Institute of Medicine and has been published by National Academies Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2015-04-20 with Medical categories.
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.
Evolution Of Translational Omics
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Author : Institute of Medicine
language : en
Publisher: National Academies Press
Release Date : 2012-09-13
Evolution Of Translational Omics written by Institute of Medicine and has been published by National Academies Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2012-09-13 with Science categories.
Technologies collectively called omics enable simultaneous measurement of an enormous number of biomolecules; for example, genomics investigates thousands of DNA sequences, and proteomics examines large numbers of proteins. Scientists are using these technologies to develop innovative tests to detect disease and to predict a patient's likelihood of responding to specific drugs. Following a recent case involving premature use of omics-based tests in cancer clinical trials at Duke University, the NCI requested that the IOM establish a committee to recommend ways to strengthen omics-based test development and evaluation. This report identifies best practices to enhance development, evaluation, and translation of omics-based tests while simultaneously reinforcing steps to ensure that these tests are appropriately assessed for scientific validity before they are used to guide patient treatment in clinical trials.
Disputes And Dilemmas In Health Law
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Author : Ian R. Freckelton
language : en
Publisher: Federation Press
Release Date : 2006
Disputes And Dilemmas In Health Law written by Ian R. Freckelton and has been published by Federation Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2006 with Family & Relationships categories.
This book replaces the successful Controversies in Health Law. Under the same editorship and much the same authorship, it is substantially larger (30 chapters instead of 18) and correspondingly more comprehensive. It retains the lively analysis and the focus on controversial and cutting-edge problems. The chapters are broken up into parts covering Litigation and Liabilty; Reproductive Technologies; The Sequelae of the End of Life; Public Health; Ethical Frameworks and Dilemmas; Regulation; Human Rights and Therapeutic Jurisprudence; Research and Vulnerability and Information, Privacy and Confidentiality . They consider issues raised by new technologies, changing legislation and altering community expectations; by new regulatory processes for medicine and all of the health professions; by the fundamental changes to civil liability for medical negligence; by the fierce debate over the role of coroners. Disputes and Dilemmas in Health Law covers questions on property in human tissue and on the ethical and legal aspects of the genetics revolution; provides a modern take on "old" issues such as reproductive law; takes account of changes relating to expert evidence; and discusses how difficult cases in relation to psychiatric injury and wrongful life are pushing compensability to its edges.
A Beginner S Guide To Using Open Access Data
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Author : Saif Aldeen Saleh AlRyalat
language : en
Publisher: CRC Press
Release Date : 2019-02-12
A Beginner S Guide To Using Open Access Data written by Saif Aldeen Saleh AlRyalat and has been published by CRC Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2019-02-12 with Computers categories.
Open Access Data is emerging as a source for cutting edge scholarship. This concise book provides guidance from generating a research idea to publishing results. Both young researchers and well-established scholars can use this book to upgrade their skills with respect to emerging data sources, analysis, and even post-publishing promotion. At the end of each chapter, a tutorial simulates a real example, allowing readers to apply what they learned about accessing open data, and analyzing this data to reach the results. This book can be of use by established researchers analyzing data, publishing, and actively promoting ongoing and research. Key selling features: Describes the steps, from A-Z, for doing open data research Includes interactive tutorials following each chapter Provides guidelines for readers so that they can use their own accessed open data Reviews recent software and websites promoting and enabling open data research Supplements websites which update recent open data sources
Neurotechnologies For Human Augmentation
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Author : Davide Valeriani
language : en
Publisher: Frontiers Media SA
Release Date : 2022-01-06
Neurotechnologies For Human Augmentation written by Davide Valeriani and has been published by Frontiers Media SA this book supported file pdf, txt, epub, kindle and other format this book has been release on 2022-01-06 with Science categories.