responsible genomic data sharing

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Responsible Genomic Data Sharing
Author :
Publisher : Academic Press
Release Date :
ISBN 10 : 9780128161975
Pages : 384 pages
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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

Responsible Genomic Data Sharing

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,

GET BOOK!
Responsible Genomic Data Sharing

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

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Sharing Clinical Trial Data

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

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

"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

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Discussion Framework for Clinical Trial Data Sharing

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

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Indigenous Data Sovereignty

As the global ‘data revolution’ accelerates, how can the data rights and interests of indigenous peoples be secured? Premised on the United Nations Declaration on the Rights of Indigenous Peoples, this book argues that indigenous peoples have inherent and inalienable rights relating to the collection, ownership and application of data

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Managing Health in the Genomic Era

In Managing Health in the Genomic Era: A Guide to Family Health History and Disease Risk, Drs. Vincent C. Henrich, Lori A. Orlando, and Brian H. Shirts discuss the practical considerations surrounding the use of genomic and genetic tests to manage patient health, to provide adult disease risk assessment, to

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Ethics  Law and Governance of Biobanking

Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medical research and clinical practice are

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Sharing Clinical Research Data

Pharmaceutical companies, academic researchers, and government agencies such as the Food and Drug Administration and the National Institutes of Health all possess large quantities of clinical research data. If these data were shared more widely within and across sectors, the resulting research advances derived from data pooling and analysis could

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Direct to Consumer Genetic Testing

Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate

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Public Health Ethics

As it seeks to protect the health of populations, public health inevitably confronts a range of critical ethical challenges. This volume brings together 25 articles that open up the terrain of the ethics of public health. It features topics such as tobacco and drug control, and infectious disease.

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Uneven Ground

In the early 1970s, the federal government began recognizing self-determination for American Indian nations. As sovereign entities, Indian nations have been able to establish policies concerning health care, education, religious freedom, law enforcement, gaming, and taxation. David E. Wilkins and K. Tsianina Lomawaima discuss how the political rights and sovereign

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Real Science

A systematic, carefully reasoned, but non-technical analysis of the nature and significance of scientific knowledge.

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Sharing Research Data to Improve Public Health in Africa

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

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Genomics in Precision Medicine

Genomics in Precision Medicine makes the people aware about the field of genomics and that of precision medicine, by taking the readers through all the details related to genomics and precision medicine. It also updates the readers about the various innovations that have taken place in the field of precision

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