June 18, 2021

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Responsible Genomic Data Sharing

Responsible Genomic Data Sharing
Author : Xiaoqian Jiang,Haixu Tang
Publisher : Academic Press
Release Date : 2020-03-14
Category : Science
Total pages :210
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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

Genomic Data Sharing

Genomic Data Sharing
Author : Jennifer B McCormick,Jyotishman Pathak
Publisher : Academic Press
Release Date : 2020-10
Category :
Total pages :129
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Over the last decade increasing emphasis has been placed on biomedical data sharing, with the goal of making data sets available to a wide range of researchers. Genomic data sets are particularly vulnerable to security breaches and ethical and legal complications, and genomic data storage and access needs must comply with federal and state laws and regulations. However, it is equally important that the ethical, legal, political, and social issues (ELSI) including privacy and confidentiality, access, informed consent, and return of both individual and aggregate research results to participants are recognized and addressed. Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine provides a comprehensive overview of current and emerging issues in genomic data sharing as applied in new genomic research and precision medicine. Here, international leaders in genomic data sharing examine these issues in-depth, and offer practical case studies highlighting key successes, challenges, and opportunities. Existing genomic data sharing consortia discussed include 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 front lines, this book provides succinct overviews of ethical, legal, social, and IT challenges relevant to research employing and sharing genomic data. Clinician investigators, clinicians affiliated with academic medical centers, policymakers, and regulators will also gain insight allowing them to navigate the increasingly complex ethical, social, and clinical landscape of genomic data sharing.

Comparing Genomic Data Sharing Policies from the National Institutes of Health, Global Alliance, and Reg4All

Comparing Genomic Data Sharing Policies from the National Institutes of Health, Global Alliance, and Reg4All
Author : Katherine L. Kwong
Publisher : Unknown
Release Date : 2014
Category :
Total pages :41
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Genomic data sharing has become increasingly important with "big data" genomics. Successful genomic data sharing requires multiple stakeholders cooperating with one another. Using discourse analysis, I compared three proposed genomic data sharing policies created by the National Institutes of Health, Reg4All and the Global Alliance for Genomics and Health. Data producers, data users, funders, participants, and end users were differently involved in the policy development process leading to policies that prioritize different needs and interests in genomic data sharing. The NIH policy satisfies the interests of data users and funders; Reg4All's policy focuses on participants, end users, and data users, and the Global Alliance policy represents a compromise leaving all stakeholders somewhat satisfied. This analysis highlights how the policy options benefit the different stakeholders and suggests ways to create a system that more evenly addresses the concerns and interests of all stakeholders, allowing for more equitable genomic data sharing.

Evaluation of a Trust-enabled Framework for Genomic Data Sharing Within an Insurance Context

Evaluation of a Trust-enabled Framework for Genomic Data Sharing Within an Insurance Context
Author : Mattia Preda
Publisher : Unknown
Release Date : 2017
Category :
Total pages :129
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Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re-use across Societies

Enhancing Access to and Sharing of Data Reconciling Risks and Benefits for Data Re-use across Societies
Author : OECD
Publisher : OECD Publishing
Release Date : 2019-11-26
Category :
Total pages :135
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This report examines the opportunities of enhancing access to and sharing of data (EASD) in the context of the growing importance of artificial intelligence and the Internet of Things. It discusses how EASD can maximise the social and economic value of data re-use and how the related risks and challenges can be addressed. It highlights the trade-offs, complementarities and possible unintended consequences of policy action – and inaction. It also provides examples of EASD approaches and policy initiatives in OECD countries and partner economies.

Factors in Genetic Data Sharing Decisions

Factors in Genetic Data Sharing Decisions
Author : William Robert Aurite
Publisher : Unknown
Release Date : 2019
Category :
Total pages :129
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Recent technological advances have transformed genomic and genetic research. Genome- wide association studies enable scientists to identify specific genetic variants that may be linked to risks for certain diseases. The ability of these studies to find new associations is dependent on both the availability and quantity of genetic data. The availability of genetic data is predicated, in part, by the willingness of an individual to share genetic data. Despite the importance of data sharing in such studies, not much is known about the factors that may impact genetic data sharing decisions. Personal and interdependent privacy considerations in these decisions are also not well understood. Direct-to-Consumer (DTC) genetic testing services are an emergent and potentially rich source for genetic data. In order for this data to be leveraged in a research domain, users must first elect to share their data. The number of individuals subscribing to DTC services is expected to increase, further necessitating the need for a more complete understanding of factors contributing to sharing decisions. This dissertation is structured to address aforementioned and other lines of inquiry in the form of five studies. The first study in this dissertation examines privacy concerns and likely use factors that may help shape an individual's decision to take a genetic test. The second, third, and fourth studies develop numerous regression and classification models for the intention to share genetic data. Specific focus is paid to the socioeconomic, sociodemographic, and relevant experience factors. The fifth study presented in this dissertation addresses an important aspect of genetic research, diversity. In this study, Indigenous perspectives on DTC genetic testing services are explored with careful attention paid to barriers and motivators of involvement in genetic testing. Together, these studies form a comprehensive understanding of the factors that impact genetic data sharing decisions. This dissertation and its findings have implications for both medical and commercial research, specifically in regards to targeted recruitment and data acquisition strategies.

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

Evaluating the Gap Between Research Ethics Review and Data Sharing in the Pediatric Infrastructure Sciences
Author : Vasiliki Rahimzadeh
Publisher : Unknown
Release Date : 2019
Category :
Total pages :129
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"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 sharing can be accentuated when involving children, from whom data may require special protections. Absent understanding the ethical-legal bases upon which responsible pediatric data sharing rests, present and future children may not reap the benefits of a healthcare system that continuously ‘learns’ from the production, use and exchange of their data. The purpose of this thesis is twofold: to identify the ethical, legal, social and scientific factors that enable ‘responsible’ genomic and associated clinical data sharing involving children; and to develop a policy framework guiding responsible sharing for the pediatric genomics community in Canada. METHODS: A systematic review of reasons was combined with policy Delphi methods to develop the Key Implications of Data Sharing (KIDS) framework for pediatric genomics. Thematic content, and descriptive statistical analyses were used to understand how 12 Canadian pediatricians, genomic researchers, ethicists and bioethics scholars prioritize the ethical-legal, social and scientific policy positions outlined in the KIDS framework. RESULTS: The panel reached consensus on 9 of 12 original policy positions identified in the systematic review and refined during a key informant committee meeting of international data sharing experts. Discrepant views related to informational risks, data access and oversight of anonymized versus coded genomic data were primary sources of dissention. CONCLUSION: This thesis makes two contributions to the theory and practice of responsible data sharing involving children in Canada. First, it suggests that skepticism of data anonymization drives support for more stringent access controls and oversight when data involve children. Second, greater emphasis on data accountability—coupled with data security—could serve as a more effective policy lever to preserve patient trust in data sharing given rapid progress in computation, ensuring children remain at the forefront of genomic innovation"--

Genetic Diversity and Genomics of the Immune Response

Genetic Diversity and Genomics of the Immune Response
Author : Daniel E. Geroghty
Publisher : Unknown
Release Date : 2002
Category : Genomics
Total pages :206
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Ethical Challenges as We Approach the End of the Human Genome Project

Ethical Challenges as We Approach the End of the Human Genome Project
Author : Anonim
Publisher : Unknown
Release Date : 2000
Category : Bioethics
Total pages :123
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Applied Genomics and Public Health

Applied Genomics and Public Health
Author : George P. Patrinos
Publisher : Academic Press
Release Date : 2019-11-13
Category : Medical
Total pages :404
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Applied Genomics and Public Health examines the interdisciplinary and growing area of how evidence-based genomic knowledge can be applied to public health, population health, healthcare and health policies. The book gathers experts from a variety of disciplines, including life sciences, social sciences, and health care to develop a comprehensive overview of the field. In addition, the book delves into subjects such as pharmacogenomics, genethics, big data, data translation and analysis, economic evaluation, genomic awareness and education, sociology, pricing and reimbursement, policy measures and economic evaluation in genomic medicine. This book is essential reading for researchers and students exploring applications of genomics to population and public health. In addition, it is ideal for those in the biomedical sciences, medical sociologists, healthcare professionals, nurses, regulatory bodies and health economists interested in learning more about this growing field. Explores the growing application of genomics to population and public health Features internationally renowned contributors from a variety of related fields Contains chapters on important topics such as genomic data sharing, genethics and public health genomics, genomics and sociology, and regulatory aspects of genomic medicine and pharmacogenomics

Privacy-preserving Genomic Data Publishing Via Differential Privacy

Privacy-preserving Genomic Data Publishing Via Differential Privacy
Author : Tanya Khatri
Publisher : Unknown
Release Date : 2018
Category : Data encryption (Computer science)
Total pages :68
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"Privacy-preserving data publishing is a mechanism for sharing data while ensuring the privacy of individuals is preserved in the published data and utility is maintained for data mining and analysis. There is a huge need for sharing genomic data to advance medical and health research. However, since genomic data is highly sensitive and the ultimate identifier, it is a big challenge to publish genomic data while protecting the privacy of individuals in the data. In this thesis, we address the aforementioned challenge by presenting an approach for privacy-preserving genomic data publishing via differentially-private suffix tree. The proposed algorithm uses a top-down approach and utilizes Laplace mechanism to divide the raw genomic data into disjoint partitions, and then normalize the partitioning structure to ensure consistency and maintain utility. The output of our algorithm is a differentially-private suffix tree, a data structure most suitable for efficient search on genomic data. We experiment on real-life genomic data obtained from the Human Genome Privacy Challenge project, and we show that our approach is efficient, scalable, and achieves high utility with respect to genomic sequence matching count queries."--Boise State University ScholarWorks.

Anonymization of Electronic Medical Records to Support Clinical Analysis

Anonymization of Electronic Medical Records to Support Clinical Analysis
Author : Aris Gkoulalas-Divanis,Grigorios Loukides
Publisher : Springer Science & Business Media
Release Date : 2012-10-13
Category : Medical
Total pages :72
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Anonymization of Electronic Medical Records to Support Clinical Analysis closely examines the privacy threats that may arise from medical data sharing, and surveys the state-of-the-art methods developed to safeguard data against these threats. To motivate the need for computational methods, the book first explores the main challenges facing the privacy-protection of medical data using the existing policies, practices and regulations. Then, it takes an in-depth look at the popular computational privacy-preserving methods that have been developed for demographic, clinical and genomic data sharing, and closely analyzes the privacy principles behind these methods, as well as the optimization and algorithmic strategies that they employ. Finally, through a series of in-depth case studies that highlight data from the US Census as well as the Vanderbilt University Medical Center, the book outlines a new, innovative class of privacy-preserving methods designed to ensure the integrity of transferred medical data for subsequent analysis, such as discovering or validating associations between clinical and genomic information. Anonymization of Electronic Medical Records to Support Clinical Analysis is intended for professionals as a reference guide for safeguarding the privacy and data integrity of sensitive medical records. Academics and other research scientists will also find the book invaluable.

Perfect DNA

Perfect DNA
Author : Manuel Corpas
Publisher : Unknown
Release Date : 2016-12-15
Category :
Total pages :246
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Anyone can have his or her genome analysed today. But no one is prepared for how to deal psychologically or emotionally with an 80% probability of early-onset Alzheimer's. Or breast cancer. Or autism. Would we plan children earlier? Would we avoid children? Will we now design our children? Would our relationships be tarnished? And, perhaps more poignantly, does having a healthier genome make us superior beings? Perfect DNA is a novel that uses Dr Manuel Corpas' own experiences and expertise as genome scientist to begin exploring some of these tremendously challenging issues. Perfect DNA is set in the mid 2030's. The main protagonist is John Malcolm, a forty-something average-joe accountant based in London. The sudden death of his father has got him thinking about his own health. On a whim he signs up for a genetic test. This test includes an extensive personality, environmental and genetic survey that predicts fairly accurately the life expectancy of the customer (assuming that no accidents happen). The novel follows John and his wife Jessica after they get widely different test results. John's prognosis is brilliant. Jessica's is the reverse. Traumatised, they seek advice from a genetic counsellor, Professor Riera, who is overwhelmed when he discovers that John has the greatest life score prediction he has ever heard of. He immediately sees the business potential of marketing John's personal genetic information to pharmaceutical corporations for gene therapy. Repulsed by the idea, but with his marriage on the line and no money to remedy Jessica's genetic flaws, John is cornered into considering selling his own genetic identity in order to prolong his wife's life and ultimately save her from a terrible death. * Please note that this book is published by DNAdigest (UK charity reg. #1154095) and proceeds made from this book will go to support this charity, which promotes the values of ethical data sharing in genomics.

IBM Systems Journal

IBM Systems Journal
Author : Anonim
Publisher : Unknown
Release Date : 2007
Category : Computers
Total pages :129
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Sharing Genomic and Phenotypic Data for Genomewide Association Studies

Sharing Genomic and Phenotypic Data for Genomewide Association Studies
Author : Julie Magdalen Bares
Publisher : Unknown
Release Date : 2008
Category :
Total pages :142
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