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Framework For Responsible Sharing Of Genomic And Health Related Data
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Book Synopsis Framework for Responsible Sharing of Genomic and Health-Related Data by : Ibtisam Mahmoud
Download or read book Framework for Responsible Sharing of Genomic and Health-Related Data written by Ibtisam Mahmoud and published by . This book was released on 2016 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: This Framework is developed under the auspices of the Global Alliance for Genomics and Health. Its mission is to accelerate progress in human health by helping to establish a common Framework of harmonized approaches to enable effective and responsible sharing of genomic and clinical data and to catalyze data sharing projects that drive and demonstrate the value of data sharing.
Book Synopsis Sharing Clinical Trial Data by : Institute of Medicine
Download or read book Sharing Clinical Trial Data written by Institute of Medicine and published by National Academies Press. This book was released on 2015-04-20 with total page 236 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Additional Protocol to the Convention on Human Rights and Biomedicine, Concerning Biomedical Research by : Council of Europe
Download or read book Additional Protocol to the Convention on Human Rights and Biomedicine, Concerning Biomedical Research written by Council of Europe and published by Council of Europe. This book was released on 2005-01-01 with total page 32 pages. Available in PDF, EPUB and Kindle. Book excerpt: This protocol covers the full range of research activities in the health field that involve interventions on human beings. It aims to protect the dignity and identity of everyone involved, without discrimination.
Author :Committee on Strategies for Responsible Sharing of Clinical Trial Data Publisher : ISBN 13 :9780309297790 Total Pages :0 pages Book Rating :4.2/5 (977 download)
Book Synopsis Discussion Framework for Clinical Trial Data Sharing by : Committee on Strategies for Responsible Sharing of Clinical Trial Data
Download or read book Discussion Framework for Clinical Trial Data Sharing written by Committee on Strategies for Responsible Sharing of Clinical Trial Data and published by . This book was released on 2014 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Sharing data generated through the conduct of clinical trials offers the promise of placing evidence about the safety and efficacy of therapies and clinical interventions on a firmer basis and enhancing the benefits of clinical trials. Ultimately, such data sharing - if carried out appropriately - could lead to improved clinical care and greater public trust in clinical research and health care. Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities is part of a study of how data from clinical trials might best be shared. This document is designed as a framework for discussion and public comment. This framework is being released to stimulate reactions and comments from stakeholders and the public. The framework summarizes the committee's initial thoughts on guiding principles that underpin responsible sharing of clinical trial data, defines key elements of clinical trial data and data sharing, and describes a selected set of clinical trial data sharing activities.
Book Synopsis Integrating Genomics Into Personalised Healthcare by :
Download or read book Integrating Genomics Into Personalised Healthcare written by and published by . This book was released on 2020 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: The Joint Research Centre organised a high-level scientific conference, entitled 'Integrating genomics into personalised healthcare: a science-for-policy perspective', on 12-13 February 2019 in Brussels. This flagship event addressed, inter alia, current and future genome-based screening and diagnoses schemes in terms of quality assurance and implications for individuals, patients, the health care sector and society at large. The focus of the event was on supporting patient-centric policies, covering important aspects such, data privacy and ownership and security of the genetic information produced, ethics and the impact of the genomics market on healthcare systems. The conference highlighted challenges to the implementation and the uptake of genomics-based screening and diagnosis in health systems and mapped the appropriate actions. The event highlighted the strong disposition of the European Commission to foster integration of genomics into personalised healthcare and underlined the genomics potential to revolutionise healthcare in several ways. Moreover, it highlighted the European Commission ongoing actions to avoid that the 'potential' remains as such, by: - increasing awareness amongst policy makers; - supporting voluntary coordination mechanism of national, regional, and local public authorities to link the ongoing genomic medicine initiatives; - supporting the development of technical specifications to secure access and cross-border exchange of genomic datasets and to facilitate responsible sharing of information; - supporting a coordinated data governance framework; - promoting the use of open standards and data management systems; - facilitating the creation of the right environment for the uptake by reaching out and communicating to citizens, as part of the EU culture of trust and transparency. The main messages highlighted during the conference, where special attention needs to be focused, are: - Access to data that have to be regulated, ensuring protection and responsible sharing; - Better economy tailored assessed and able to fund research; - Capitalise on existing infrastructure, to take full advantage of the existing potential in terms of research and coordinated actions; - Develop education programmes not only for professional scientists but also to form wellinformed citizens; - Effective regulation, that is the core for development in the field; - Forging ties with society, engaging and empowering citizens.
Book Synopsis The Law and Ethics of Data Sharing in Health Sciences by : Marcelo Corrales Compagnucci
Download or read book The Law and Ethics of Data Sharing in Health Sciences written by Marcelo Corrales Compagnucci and published by Springer Nature. This book was released on 2024-01-02 with total page 211 pages. Available in PDF, EPUB and Kindle. Book excerpt: Data sharing – broadly defined as the exchange of health-related data among multiple controllers and processors – has gained increased relevance in the health sciences over recent years as the need and demand for collaboration has increased. This includes data obtained through healthcare provisions, clinical trials, observational studies, public health surveillance programs, and other data collection methods. The practice of data sharing presents several notable challenges, however. Compliance with a complex and dynamic regulatory framework is essential, with the General Data Protection Regulation being a prominent example in a European context. Recent regulatory developments related to clinical trial transparency, trade secrecy, data access, AI training data, and health data spaces further contribute to the difficulties. Simultaneously, government initiatives often encourage scientists to embrace principles of “open data” and “open innovation.” The variety of regulations in this domain has the potential to impede widespread data sharing and hinder innovation. This edited volume, therefore, compiles comparative case studies authored by leading scholars from diverse disciplines and jurisdictions. The book aims to outline the legal complexities of data sharing. By examining real-world scenarios from diverse disciplines and a global perspective, it explores the normative, policy, and ethical dilemmas that surround data sharing in the health sciences today. Chapter Patient Perspectives on Data Sharing, Chapter Supplementary Measures and Appropriate Safeguards for International Transfers of Health Data after Schrems II are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.
Book Synopsis Responsible Genomic Data Sharing by : Xiaoqian Jiang
Download or read book Responsible Genomic Data Sharing written by Xiaoqian Jiang and published by Academic Press. This book was released on 2020-03-14 with total page 212 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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
Book Synopsis GDPR and Biobanking by : Jane Reichel
Download or read book GDPR and Biobanking written by Jane Reichel and published by Springer Nature. This book was released on 2021 with total page 432 pages. Available in PDF, EPUB and Kindle. Book excerpt: Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .
Book Synopsis Responsible Genomic Data Sharing by : Xiaoqian Jiang
Download or read book Responsible Genomic Data Sharing written by Xiaoqian Jiang and published by Academic Press. This book was released on 2020-03-17 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Sharing Linked Data for Health Research by : Carolyn Adams
Download or read book Sharing Linked Data for Health Research written by Carolyn Adams and published by Cambridge University Press. This book was released on 2022-06-09 with total page 279 pages. Available in PDF, EPUB and Kindle. Book excerpt: Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address “wicked problems” in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise.
Book Synopsis Personal Genomes: Accessing, Sharing, and Interpretation by : Manuel Corpas
Download or read book Personal Genomes: Accessing, Sharing, and Interpretation written by Manuel Corpas and published by Frontiers Media SA. This book was released on 2021-08-02 with total page 146 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309378125 Total Pages :126 pages Book Rating :4.3/5 (93 download)
Book Synopsis Sharing Research Data to Improve Public Health in Africa by : National Academies of Sciences, Engineering, and Medicine
Download or read book Sharing Research Data to Improve Public Health in Africa written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2015-09-18 with total page 126 pages. Available in PDF, EPUB and Kindle. Book excerpt: Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.
Book Synopsis Medical Data Sharing, Harmonization and Analytics by : Vasileios Pezoulas
Download or read book Medical Data Sharing, Harmonization and Analytics written by Vasileios Pezoulas and published by Academic Press. This book was released on 2020-01-05 with total page 384 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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
Book Synopsis Public Health Informatics and Information Systems by : J.A. Magnuson
Download or read book Public Health Informatics and Information Systems written by J.A. Magnuson and published by Springer Science & Business Media. This book was released on 2013-11-29 with total page 665 pages. Available in PDF, EPUB and Kindle. Book excerpt: This revised edition covers all aspects of public health informatics and discusses the creation and management of an information technology infrastructure that is essential in linking state and local organizations in their efforts to gather data for the surveillance and prevention. Public health officials will have to understand basic principles of information resource management in order to make the appropriate technology choices that will guide the future of their organizations. Public health continues to be at the forefront of modern medicine, given the importance of implementing a population-based health approach and to addressing chronic health conditions. This book provides informatics principles and examples of practice in a public health context. In doing so, it clarifies the ways in which newer information technologies will improve individual and community health status. This book's primary purpose is to consolidate key information and promote a strategic approach to information systems and development, making it a resource for use by faculty and students of public health, as well as the practicing public health professional. Chapter highlights include: The Governmental and Legislative Context of Informatics; Assessing the Value of Information Systems; Ethics, Information Technology, and Public Health; and Privacy, Confidentiality, and Security. Review questions are featured at the end of every chapter. Aside from its use for public health professionals, the book will be used by schools of public health, clinical and public health nurses and students, schools of social work, allied health, and environmental sciences.
Book Synopsis Genomic and Precision Medicine by : Geoffrey S. Ginsburg
Download or read book Genomic and Precision Medicine written by Geoffrey S. Ginsburg and published by Academic Press. This book was released on 2022-04-09 with total page 379 pages. Available in PDF, EPUB and Kindle. Book excerpt: Genomic and Precision Medicine: Oncology, Third Edition focuses on the applications of genome discovery as research points to personalized cancer therapies. Each chapter is organized to cover the application of genomics and personalized medicine tools and technologies to a) Risk Assessment and Susceptibility, b) Diagnosis and Prognosis, c) Pharmacogenomics and Precision Therapeutics, and d) Emerging and Future Opportunities in the field. - Provides a comprehensive volume written and edited by oncology genomic specialists for oncology health providers - Includes succinct commentary and key learning points that will assist providers with their local needs for implementation of genomic and personalized medicine into practice - Presents an up-to-date overview on major opportunities for genomic and personalized medicine in practice - Covers case studies that highlight the practical use of genomics in the management of patients
Book Synopsis MEDINFO 2015: EHealth-Enabled Health by : Andrew Georgiou
Download or read book MEDINFO 2015: EHealth-Enabled Health written by Andrew Georgiou and published by . This book was released on 2015 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Health and Biomedical Informatics is a rapidly evolving multidisciplinary field; one in which new developments may prove crucial in meeting the challenge of providing cost-effective, patient-centered healthcare worldwide.This book presents the proceedings of MEDINFO 2015, held in S�o Paulo, Brazil, in August 2015. The theme of this conference is 'eHealth-enabled Health', and the broad spectrum of topics covered ranges from emerging methodologies to successful implementations of innovative applications, integration and evaluation of eHealth systems and solutions. Included here are 178 full papers and 248 poster abstracts, selected after a rigorous review process from nearly 800 submissions by 2,500 authors from 59 countries. The conference brings together researchers, clinicians, technologists and managers from all over the world to share their experiences on the use of information methods, systems and technologies to promote patient-centered care, improving patient safety, enhancing care outcomes, facilitating translational research and enabling precision medicine, as well as advancing education and skills in Health and Biomedical Informatics. This comprehensive overview of Health and Biomedical Informatics will be of interest to all those involved in designing, commissioning and providing healthcare, wherever they may be.
Book Synopsis Genomic Data Sharing by : Jennifer B. Mccormick
Download or read book Genomic Data Sharing written by Jennifer B. Mccormick and published by Academic Press. This book was released on 2022-11-29 with total page 232 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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
