Genomic Data Security And Privacy

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GDPR and Biobanking

Author : Jane Reichel
Publisher : Springer Nature
ISBN 13 : 3030493881
Total Pages : 432 pages
Book Rating : 4.0/5 (34 download)

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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. .

Genetic Secrets

Author : Mark A. Rothstein
Publisher : Yale University Press
ISBN 13 : 9780300080636
Total Pages : 532 pages
Book Rating : 4.0/5 (86 download)

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Book Synopsis Genetic Secrets by : Mark A. Rothstein

Download or read book Genetic Secrets written by Mark A. Rothstein and published by Yale University Press. This book was released on 1997-01-01 with total page 532 pages. Available in PDF, EPUB and Kindle. Book excerpt: The dramatic explosion of information brought about by recent advances in genetic research brings welcome scientific knowledge. Yet this new knowledge also raises complex and troubling issues concerning privacy and confidentiality. This thought-provoking book is the first comprehensive exploration of these ethical, legal, and social issues. Distinguished experts in law, medicine, bioethics, public health, science policy, clinical genetics, philosophy, and other fields consider the many contexts in which issues of genetic privacy arise--from research and clinical settings to workplaces, insurance offices, schools, and the courts. The first chapters of this book set out a framework for analyzing genetic privacy and confidentiality, comparing genetic privacy with other forms of medical privacy. Later chapters deal with such topics as concerns that arise in the health care setting (the patient-physician relationship, genetic counseling and privacy); the effect of new technology (the role of commercial genomics, forensic DNA applications); nonmedical uses of genetic information (the law of medical and genetic privacy in the workplace, implications of genetic testing for health and life insurance); and a review of ethics and law in the United States and abroad. In the concluding chapter, Mark A. Rothstein discusses flaws in existing and proposed legislation designed to protect genetic privacy and confidentiality, and he offers a new set of guidelines for policy makers.

Assessing Genetic Risks

Author : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309047986
Total Pages : 353 pages
Book Rating : 4.3/5 (9 download)

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Book Synopsis Assessing Genetic Risks by : Institute of Medicine

Download or read book Assessing Genetic Risks written by Institute of Medicine and published by National Academies Press. This book was released on 1994-01-01 with total page 353 pages. Available in PDF, EPUB and Kindle. Book excerpt: Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.

The DNA Mystique

Author : Dorothy Nelkin
Publisher : University of Michigan Press
ISBN 13 : 0472025074
Total Pages : 317 pages
Book Rating : 4.4/5 (72 download)

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Book Synopsis The DNA Mystique by : Dorothy Nelkin

Download or read book The DNA Mystique written by Dorothy Nelkin and published by University of Michigan Press. This book was released on 2010-02-01 with total page 317 pages. Available in PDF, EPUB and Kindle. Book excerpt: "The DNA Mystique is a wake-up call to all who would dismiss America's love affair with 'the gene' as a merely eccentric obsession." --In These Times "Nelkin and Lindee are to be warmly congratulated for opening up this intriguing field [of genetics in popular culture] to further study." --Nature The DNA Mystique suggests that the gene in popular culture draws on scientific ideas but is not constrained by the technical definition of the gene as a section of DNA that codes for a protein. In highlighting DNA as it appears in soap operas, comic books, advertising, and other expressions of mass culture, the authors propose that these domains provide critical insights into science itself. With a new introduction and conclusion, this edition will continue to be an engaging, accessible, and provocative text for the sociology, anthropology, and bioethics classroom, as well as stimulating reading for those generally interested in science and culture.

Evaluating Human Genetic Diversity

Author : National Research Council
Publisher : National Academies Press
ISBN 13 : 0309184746
Total Pages : 101 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Evaluating Human Genetic Diversity by : National Research Council

Download or read book Evaluating Human Genetic Diversity written by National Research Council and published by National Academies Press. This book was released on 1998-01-19 with total page 101 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book assesses the scientific value and merit of research on human genetic differencesâ€"including a collection of DNA samples that represents the whole of human genetic diversityâ€"and the ethical, organizational, and policy issues surrounding such research. Evaluating Human Genetic Diversity discusses the potential uses of such collection, such as providing insight into human evolution and origins and serving as a springboard for important medical research. It also addresses issues of confidentiality and individual privacy for participants in genetic diversity research studies.

Conducting Biosocial Surveys

Author : National Research Council
Publisher : National Academies Press
ISBN 13 : 0309157064
Total Pages : 124 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Conducting Biosocial Surveys by : National Research Council

Download or read book Conducting Biosocial Surveys written by National Research Council and published by National Academies Press. This book was released on 2010-10-02 with total page 124 pages. Available in PDF, EPUB and Kindle. Book excerpt: Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light. In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis-all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing. Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.

Toward Precision Medicine

Author : National Research Council
Publisher : National Academies Press
ISBN 13 : 0309222222
Total Pages : 142 pages
Book Rating : 4.3/5 (92 download)

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Book Synopsis Toward Precision Medicine by : National Research Council

Download or read book Toward Precision Medicine written by National Research Council and published by National Academies Press. This book was released on 2012-01-16 with total page 142 pages. Available in PDF, EPUB and Kindle. Book excerpt: Motivated by the explosion of molecular data on humans-particularly data associated with individual patients-and the sense that there are large, as-yet-untapped opportunities to use this data to improve health outcomes, Toward Precision Medicine explores the feasibility and need for "a new taxonomy of human disease based on molecular biology" and develops a potential framework for creating one. The book says that a new data network that integrates emerging research on the molecular makeup of diseases with clinical data on individual patients could drive the development of a more accurate classification of diseases and ultimately enhance diagnosis and treatment. The "new taxonomy" that emerges would define diseases by their underlying molecular causes and other factors in addition to their traditional physical signs and symptoms. The book adds that the new data network could also improve biomedical research by enabling scientists to access patients' information during treatment while still protecting their rights. This would allow the marriage of molecular research and clinical data at the point of care, as opposed to research information continuing to reside primarily in academia. Toward Precision Medicine notes that moving toward individualized medicine requires that researchers and health care providers have access to very large sets of health- and disease-related data linked to individual patients. These data are also critical for developing the information commons, the knowledge network of disease, and ultimately the new taxonomy.

Genomics and Personalized Medicine

Author : Michael Snyder
Publisher : Oxford University Press
ISBN 13 : 0190234784
Total Pages : 185 pages
Book Rating : 4.1/5 (92 download)

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Book Synopsis Genomics and Personalized Medicine by : Michael Snyder

Download or read book Genomics and Personalized Medicine written by Michael Snyder and published by Oxford University Press. This book was released on 2016-02-09 with total page 185 pages. Available in PDF, EPUB and Kindle. Book excerpt: In 2001 the Human Genome Project succeeded in mapping the DNA of humans. This landmark accomplishment launched the field of genomics, the integrated study of all the genes in the human body and the related biomedical interventions that can be tailored to benefit a person's health. Today genomics, part of a larger movement toward personalized medicine, is poised to revolutionize health care. By cross-referencing an individual's genetic sequence -- their genome -- against known elements of "Big Data," elements of genomics are already being incorporated on a widespread basis, including prenatal disease screening and targeted cancer treatments. With more innovations soon to arrive at the bedside, the promise of the genomics revolution is limitless. This entry in the What Everyone Needs to Know series offers an authoritative resource on the prospects and realities of genomics and personalized medicine. As this science continues to alter traditional medical paradigms, consumers are faced with additional options and more complicated decisions regarding their health care. This book provides the essential information everyone needs.

Federal Statistics, Multiple Data Sources, and Privacy Protection

Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
ISBN 13 : 0309465370
Total Pages : 195 pages
Book Rating : 4.3/5 (94 download)

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Book Synopsis Federal Statistics, Multiple Data Sources, and Privacy Protection by : National Academies of Sciences, Engineering, and Medicine

Download or read book Federal Statistics, Multiple Data Sources, and Privacy Protection written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-01-27 with total page 195 pages. Available in PDF, EPUB and Kindle. Book excerpt: The environment for obtaining information and providing statistical data for policy makers and the public has changed significantly in the past decade, raising questions about the fundamental survey paradigm that underlies federal statistics. New data sources provide opportunities to develop a new paradigm that can improve timeliness, geographic or subpopulation detail, and statistical efficiency. It also has the potential to reduce the costs of producing federal statistics. The panel's first report described federal statistical agencies' current paradigm, which relies heavily on sample surveys for producing national statistics, and challenges agencies are facing; the legal frameworks and mechanisms for protecting the privacy and confidentiality of statistical data and for providing researchers access to data, and challenges to those frameworks and mechanisms; and statistical agencies access to alternative sources of data. The panel recommended a new approach for federal statistical programs that would combine diverse data sources from government and private sector sources and the creation of a new entity that would provide the foundational elements needed for this new approach, including legal authority to access data and protect privacy. This second of the panel's two reports builds on the analysis, conclusions, and recommendations in the first one. This report assesses alternative methods for implementing a new approach that would combine diverse data sources from government and private sector sources, including describing statistical models for combining data from multiple sources; examining statistical and computer science approaches that foster privacy protections; evaluating frameworks for assessing the quality and utility of alternative data sources; and various models for implementing the recommended new entity. Together, the two reports offer ideas and recommendations to help federal statistical agencies examine and evaluate data from alternative sources and then combine them as appropriate to provide the country with more timely, actionable, and useful information for policy makers, businesses, and individuals.

Reinventing Data Protection?

Author : Serge Gutwirth
Publisher : Springer Science & Business Media
ISBN 13 : 1402094981
Total Pages : 356 pages
Book Rating : 4.4/5 (2 download)

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Book Synopsis Reinventing Data Protection? by : Serge Gutwirth

Download or read book Reinventing Data Protection? written by Serge Gutwirth and published by Springer Science & Business Media. This book was released on 2009-05-24 with total page 356 pages. Available in PDF, EPUB and Kindle. Book excerpt: data. Furthermore, the European Union established clear basic principles for the collection, storage and use of personal data by governments, businesses and other organizations or individuals in Directive 95/46/EC and Directive 2002/58/EC on Privacy and Electronic communications. Nonetheless, the twenty-?rst century citizen – utilizing the full potential of what ICT-technology has to offer – seems to develop a digital persona that becomes increasingly part of his individual social identity. From this perspective, control over personal information is control over an aspect of the identity one projects in the world. The right to privacy is the freedom from unreasonable constraints on one’s own identity. Transactiondata–bothtraf?candlocationdata–deserveourparticularattention. As we make phone calls, send e-mails or SMS messages, data trails are generated within public networks that we use for these communications. While traf?c data are necessary for the provision of communication services, they are also very sensitive data. They can give a complete picture of a person’s contacts, habits, interests, act- ities and whereabouts. Location data, especially if very precise, can be used for the provision of services such as route guidance, location of stolen or missing property, tourist information, etc. In case of emergency, they can be helpful in dispatching assistance and rescue teams to the location of a person in distress. However, p- cessing location data in mobile communication networks also creates the possibility of permanent surveillance.

Artificial Intelligence and Evolutionary Computations in Engineering Systems

Author : Subhransu Sekhar Dash
Publisher : Springer Nature
ISBN 13 : 9811501998
Total Pages : 781 pages
Book Rating : 4.8/5 (115 download)

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Book Synopsis Artificial Intelligence and Evolutionary Computations in Engineering Systems by : Subhransu Sekhar Dash

Download or read book Artificial Intelligence and Evolutionary Computations in Engineering Systems written by Subhransu Sekhar Dash and published by Springer Nature. This book was released on 2020-02-08 with total page 781 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book gathers selected papers presented at the 4th International Conference on Artificial Intelligence and Evolutionary Computations in Engineering Systems, held at the SRM Institute of Science and Technology, Kattankulathur, Chennai, India, from 11 to 13 April 2019. It covers advances and recent developments in various computational intelligence techniques, with an emphasis on the design of communication systems. In addition, it shares valuable insights into advanced computational methodologies such as neural networks, fuzzy systems, evolutionary algorithms, hybrid intelligent systems, uncertain reasoning techniques, and other machine learning methods and their application to decision-making and problem-solving in mobile and wireless communication networks.

Protecting Genetic Privacy in Biobanking Through Data Protection Law

Author : Dara Hallinan
Publisher :
ISBN 13 : 0192896474
Total Pages : 305 pages
Book Rating : 4.1/5 (928 download)

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Book Synopsis Protecting Genetic Privacy in Biobanking Through Data Protection Law by : Dara Hallinan

Download or read book Protecting Genetic Privacy in Biobanking Through Data Protection Law written by Dara Hallinan and published by . This book was released on 2021-03 with total page 305 pages. Available in PDF, EPUB and Kindle. Book excerpt: Hallinan argues that the substantive framework presented by the GDPR offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking.

Beyond the HIPAA Privacy Rule

Author : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309124999
Total Pages : 334 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Beyond the HIPAA Privacy Rule by : Institute of Medicine

Download or read book Beyond the HIPAA Privacy Rule written by Institute of Medicine and published by National Academies Press. This book was released on 2009-03-24 with total page 334 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.

Guide to Storage Encryption Technologies for End User Devices

Author : U.s. Department of Commerce
Publisher : Createspace Independent Publishing Platform
ISBN 13 : 9781494755683
Total Pages : 44 pages
Book Rating : 4.7/5 (556 download)

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Book Synopsis Guide to Storage Encryption Technologies for End User Devices by : U.s. Department of Commerce

Download or read book Guide to Storage Encryption Technologies for End User Devices written by U.s. Department of Commerce and published by Createspace Independent Publishing Platform. This book was released on 2014-01-21 with total page 44 pages. Available in PDF, EPUB and Kindle. Book excerpt: In today's computing environment, there are many threats to the confidentiality of information stored on end user devices, such as personal computers, consumer devices (e.g., personal digital assistant, smart phone), and removable storage media (e.g., universal serial bus [USB] flash drive, memory card, external hard drive, writeable CD or DVD). Some threats are unintentional, such as human error, while others are intentional. Intentional threats are posed by people with many different motivations, including causing mischief and disruption and committing identity theft and other fraud. A common threat against end user devices is device loss or theft. Someone with physical access to a device has many options for attempting to view or copy the information stored on the device. Another concern is insider attacks, such as an employee attempting to access sensitive information stored on another employee's device. Malware, another common threat, can give attackers unauthorized access to a device, transfer information from the device to an attacker's system, and perform other actions that jeopardize the confidentiality of the information on a device.

Protection of Human Genetic Information

Author : Australia. Law Reform Commission
Publisher : Sydney : Australian Law Reform Commission
ISBN 13 : 9780642732118
Total Pages : 441 pages
Book Rating : 4.7/5 (321 download)

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Book Synopsis Protection of Human Genetic Information by : Australia. Law Reform Commission

Download or read book Protection of Human Genetic Information written by Australia. Law Reform Commission and published by Sydney : Australian Law Reform Commission. This book was released on 2001 with total page 441 pages. Available in PDF, EPUB and Kindle. Book excerpt: 13. Law enforcement issues

Privacy and Data Protection Law

Author : William McGeveran
Publisher : Foundation Press
ISBN 13 : 9781642421125
Total Pages : 0 pages
Book Rating : 4.4/5 (211 download)

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Book Synopsis Privacy and Data Protection Law by : William McGeveran

Download or read book Privacy and Data Protection Law written by William McGeveran and published by Foundation Press. This book was released on 2023-08-21 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Privacy and Data Protection Law introduces a dynamic and rapidly growing field of law that is also fun to teach. Along with traditional topics like torts or the Fourth Amendment, it focuses on complex statutory and regulatory regimes that matter most to privacy law today. The book mixes conventional case excerpts with regulatory materials, hypothetical problems, robust coverage of global privacy law, and exploration of new technological frontiers.The Second Edition is comprehensively revised and updated throughout, including these and many other substantial new developments:Recent statutes such as the European Union's GDPR, the California Consumer Privacy Act, and novel state laws on health data and children's privacy.Major Supreme Court decisions including Carpenter v. United States, Dobbs v. Jackson Women's Health Org., and TransUnion LLC v. Ramirez.New regulatory approaches at the FTC, court challenges to the scope of FTC authority, and the record-breaking $5 billion FTC penalty on Facebook.Added discussion of emerging technological challenges like biometric identification, algorithmic bias, and data retention in an era of cheap digital storage.The clear, broad, and up-to-date coverage of Privacy and Data Protection Law prepares students for the real-world legal challenges their clients will face in an information economy.

Privacy Preservation of Genomic and Medical Data

Author : Amit Kumar Tyagi
Publisher : John Wiley & Sons
ISBN 13 : 1394213700
Total Pages : 432 pages
Book Rating : 4.3/5 (942 download)

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Book Synopsis Privacy Preservation of Genomic and Medical Data by : Amit Kumar Tyagi

Download or read book Privacy Preservation of Genomic and Medical Data written by Amit Kumar Tyagi and published by John Wiley & Sons. This book was released on 2023-11-16 with total page 432 pages. Available in PDF, EPUB and Kindle. Book excerpt: PRIVACY PRESERVATION of GENOMIC and MEDICAL DATA Discusses topics concerning the privacy preservation of genomic data in the digital era, including data security, data standards, and privacy laws so that researchers in biomedical informatics, computer privacy and ELSI can assess the latest advances in privacy-preserving techniques for the protection of human genomic data. Privacy Preservation of Genomic and Medical Data focuses on genomic data sources, analytical tools, and the importance of privacy preservation. Topics discussed include tensor flow and Bio-Weka, privacy laws, HIPAA, and other emerging technologies like Internet of Things, IoT-based cloud environments, cloud computing, edge computing, and blockchain technology for smart applications. The book starts with an introduction to genomes, genomics, genetics, transcriptomes, proteomes, and other basic concepts of modern molecular biology. DNA sequencing methodology, DNA-binding proteins, and other related terms concerning genomes and genetics, and the privacy issues are discussed in detail. The book also focuses on genomic data sources, analyzing tools, and the importance of privacy preservation. It concludes with future predictions for genomic and genomic privacy, emerging technologies, and applications. Audience Researchers in information technology, data mining, health informatics and health technologies, clinical informatics, bioinformatics, security and privacy in healthcare, as well as health policy developers in public and private health departments and public health.