Responsible Genomic Data Sharing

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Responsible Genomic Data Sharing

Xiaoqian Jiang,Haixu Tang
Responsible Genomic Data Sharing Book PDF

Author : Xiaoqian Jiang,Haixu Tang
Publisher : Academic Press
Page : 212 pages
File Size : 54,5 Mb
Release : 2020-03-14
Category : Science
ISBN : 9780128163399

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Responsible Genomic Data Sharing by Xiaoqian Jiang,Haixu Tang Pdf

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

Jennifer B. Mccormick,Jyotishman Pathak
Genomic Data Sharing Book PDF

Author : Jennifer B. Mccormick,Jyotishman Pathak
Publisher : Academic Press
Page : 232 pages
File Size : 54,5 Mb
Release : 2022-11-29
Category : Medical
ISBN : 9780128198049

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Genomic Data Sharing by Jennifer B. Mccormick,Jyotishman Pathak Pdf

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

Sharing Clinical Trial Data

Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data
Sharing Clinical Trial Data Book PDF

Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data
Publisher : National Academies Press
Page : 304 pages
File Size : 51,6 Mb
Release : 2015-04-20
Category : Medical
ISBN : 9780309316323

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Sharing Clinical Trial Data by Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data Pdf

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.

Uneven Ground

David Eugene Wilkins,K. Tsianina Lomawaima
Uneven Ground Book PDF

Author : David Eugene Wilkins,K. Tsianina Lomawaima
Publisher : University of Oklahoma Press
Page : 340 pages
File Size : 41,9 Mb
Release : 2001
Category : Social Science
ISBN : 0806133953

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Uneven Ground by David Eugene Wilkins,K. Tsianina Lomawaima Pdf

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 status of Indian nations have variously been respected, ignored, terminated, and unilaterally modified by federal lawmakers as a result of the ambivalent political and legal status of tribes under western law.

Assessing Genetic Risks

Institute of Medicine,Committee on Assessing Genetic Risks
Assessing Genetic Risks Book PDF

Author : Institute of Medicine,Committee on Assessing Genetic Risks
Publisher : National Academies Press
Page : 353 pages
File Size : 43,6 Mb
Release : 1994-01-01
Category : Medical
ISBN : 9780309047982

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Assessing Genetic Risks by Institute of Medicine,Committee on Assessing Genetic Risks Pdf

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.

Genetic Variation

Michael R. Barnes,Gerome Breen
Genetic Variation Book PDF

Author : Michael R. Barnes,Gerome Breen
Publisher : Humana Press
Page : 0 pages
File Size : 40,8 Mb
Release : 2014-10-20
Category : Science
ISBN : 1627038264

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Genetic Variation by Michael R. Barnes,Gerome Breen Pdf

“Your genome is an email attachment” What a difference a few years can make? In 2001, to a global fanfare, the completion of the frst draft sequence of the human genome was announced. This had been a Herculean effort, involving thousands of researchers and millions of dollars. Today, a project to re-sequence 1,000 genomes is well underway, and within a year or two, your own “personal genome” is likely to be available for a few thousand pounds, a price that will undoubtedly decrease further. We are fast approaching the day when your genome will be available as an email attachment (about 4 Mb). The key to this feat is the fact that any two human genomes are more than 99% identical, so rather than representing every base, there is really only a requirement to store the 1% of variable sequence judged against a common reference genome. This brings us directly to the focus of this edition of Methods in Molecular Biology, Genetic Variation. The human genome was once the focus of biology, but now individual genome var- tion is taking the center stage. This new focus on individual variation ultimately democ- tizes biology, offering individuals insight into their own phenotype. But these advances also raise huge concerns of data misuse, misinterpretation, and misunderstanding. The immediacy of individual genomes also serves to highlight our relative ignorance of human genetic variation, underlining the need for more studies of the nature and impact of genetic variation on human phenotypes.

Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2

National Academies of Sciences, Engineering, and Medicine,Division on Earth and Life Studies,Board on Life Sciences,Health and Medicine Division,Board on Health Sciences Policy,Committee on Data Needs to Monitor the Evolution of SARS-CoV-2
Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2 Book PDF

Author : National Academies of Sciences, Engineering, and Medicine,Division on Earth and Life Studies,Board on Life Sciences,Health and Medicine Division,Board on Health Sciences Policy,Committee on Data Needs to Monitor the Evolution of SARS-CoV-2
Publisher : National Academies Press
Page : 111 pages
File Size : 52,9 Mb
Release : 2020-09-29
Category : Medical
ISBN : 9780309680943

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Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2 by National Academies of Sciences, Engineering, and Medicine,Division on Earth and Life Studies,Board on Life Sciences,Health and Medicine Division,Board on Health Sciences Policy,Committee on Data Needs to Monitor the Evolution of SARS-CoV-2 Pdf

In December 2019, new cases of severe pneumonia were first detected in Wuhan, China, and the cause was determined to be a novel beta coronavirus related to the severe acute respiratory syndrome (SARS) coronavirus that emerged from a bat reservoir in 2002. Within six months, this new virusâ€"SARS coronavirus 2 (SARS-CoV-2)â€"has spread worldwide, infecting at least 10 million people with an estimated 500,000 deaths. COVID-19, the disease caused by SARS-CoV-2, was declared a public health emergency of international concern on January 30, 2020 by the World Health Organization (WHO) and a pandemic on March 11, 2020. To date, there is no approved effective treatment or vaccine for COVID-19, and it continues to spread in many countries. Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2: Modernizing Pandemic Response Strategies lays out a framework to define and describe the data needs for a system to track and correlate viral genome sequences with clinical and epidemiological data. Such a system would help ensure the integration of data on viral evolution with detection, diagnostic, and countermeasure efforts. This report also explores data collection mechanisms to ensure a representative global sample set of all relevant extant sequences and considers challenges and opportunities for coordination across existing domestic, global, and regional data sources.

GDPR and Biobanking

Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature
GDPR and Biobanking Book PDF

Author : Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature
Publisher : Springer Nature
Page : 432 pages
File Size : 52,8 Mb
Release : 2021
Category : Biobanks
ISBN : 9783030493882

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GDPR and Biobanking by Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature Pdf

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. .

Consumer Genetic Technologies

I. Glenn Cohen,Nita A. Farahany,Henry T. Greely,Carmel Shachar
Consumer Genetic Technologies Book PDF

Author : I. Glenn Cohen,Nita A. Farahany,Henry T. Greely,Carmel Shachar
Publisher : Cambridge University Press
Page : 303 pages
File Size : 46,7 Mb
Release : 2021-09-16
Category : Law
ISBN : 9781108836616

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Consumer Genetic Technologies by I. Glenn Cohen,Nita A. Farahany,Henry T. Greely,Carmel Shachar Pdf

Examines the ethical, legal, and regulatory challenges presented as genomics become commonplace, easily available consumer products.

Genomics and Society

Dhavendra Kumar,Ruth Chadwick
Genomics and Society Book PDF

Author : Dhavendra Kumar,Ruth Chadwick
Publisher : Academic Press
Page : 438 pages
File Size : 49,9 Mb
Release : 2015-10-29
Category : Science
ISBN : 9780127999210

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Genomics and Society by Dhavendra Kumar,Ruth Chadwick Pdf

Genomics and Society; Ethical, Legal-Cultural, and Socioeconomic Implications is the first book to address the vast and thorny web of ELSI topics identified as core priorities of the NHGRI in 2011. The work addresses fundamental issues of biosociety and bioeconomy as the revolution in biology moves from research lab to healthcare system. Of particular interest to healthcare practitioners, bioethicists, and health economists, and of tangential interest to the gamut of applied social scientists investigating the societal impact of new medical paradigms, the work describes a myriad of issues around consent, confidentiality, rights, patenting, regulation, and legality in the new era of genomic medicine. Addresses the vast and thorny web of ELSI topics identified as core priorities of the NHGRI in 2011 Presents the core fundamental issues of biosociety and bioeconomy as the revolution in biology moves from research lab to healthcare system Describes a myriad of issues around consent, including confidentiality, rights, patenting, regulation, and more

Heritable Human Genome Editing

The Royal Society,National Academy of Sciences,National Academy of Medicine,International Commission on the Clinical Use of Human Germline Genome Editing
Heritable Human Genome Editing Book PDF

Author : The Royal Society,National Academy of Sciences,National Academy of Medicine,International Commission on the Clinical Use of Human Germline Genome Editing
Publisher : National Academies Press
Page : 239 pages
File Size : 46,8 Mb
Release : 2021-01-16
Category : Medical
ISBN : 9780309671132

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Heritable Human Genome Editing by The Royal Society,National Academy of Sciences,National Academy of Medicine,International Commission on the Clinical Use of Human Germline Genome Editing Pdf

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.

Human Genome Editing

National Academies of Sciences, Engineering, and Medicine,National Academy of Medicine,National Academy of Sciences,Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations
Human Genome Editing Book PDF

Author : National Academies of Sciences, Engineering, and Medicine,National Academy of Medicine,National Academy of Sciences,Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations
Publisher : National Academies Press
Page : 329 pages
File Size : 45,5 Mb
Release : 2017-08-13
Category : Medical
ISBN : 9780309452885

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Human Genome Editing by National Academies of Sciences, Engineering, and Medicine,National Academy of Medicine,National Academy of Sciences,Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations Pdf

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.

Managing Health in the Genomic Era

Vincent Henrich,Lori A. Orlando,Brian H. Shirts
Managing Health in the Genomic Era Book PDF

Author : Vincent Henrich,Lori A. Orlando,Brian H. Shirts
Publisher : Academic Press
Page : 240 pages
File Size : 47,6 Mb
Release : 2020-06-27
Category : Science
ISBN : 9780128160169

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Managing Health in the Genomic Era by Vincent Henrich,Lori A. Orlando,Brian H. Shirts Pdf

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 improve diagnosis, and to support effective interventions and treatment. In 10 chapters, evidence-based information and case studies are described and examine the central place of family health history (FHH) in genomic medicine, tools and strategies for compiling and analyzing family health history, how to identify existing and novel genetic markers, how to identify lineage specific (or rare) variants within families, and how to find effective interventions based on genetic testing results and FHH. Factors that influence clinical practice, including gene-environment interactions, FHH social networking, direct to consumer (DTC) genetic testing and data sharing, algorithms for analyzing genetic data, and patient counseling are discussed from the standpoint of clinical practice. Here, frontline healthcare providers will discover succinct commentary and key examples to assist with their local needs. Relevant principles of genetic biology and inheritance are explored and guidance on available support networks and online resources is also provided. 2021 PROSE Awards - Winner: Category: Clinical Medicine: Association of American Publishers Presents a practical, accessible resource for primary care providers, allied health professionals, pharmacologists, public health professionals, students and clinical researchers Addresses genetic and genomic approaches in managing patient health, conducting and analyzing family health histories, and assessing adult disease risk Features an expert author team with direct experience integrating genetics and genomics in primary care and family medicine settings Examines the attributes and limitations of family health history, genetic testing, and genomic testing in clinical practice Includes detailed explanations following practice-based examples

Anonymizing Health Data

Khaled El Emam,Luk Arbuckle
Anonymizing Health Data Book PDF

Author : Khaled El Emam,Luk Arbuckle
Publisher : "O'Reilly Media, Inc."
Page : 228 pages
File Size : 50,9 Mb
Release : 2013-12-11
Category : Computers
ISBN : 9781449363031

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Anonymizing Health Data by Khaled El Emam,Luk Arbuckle Pdf

Updated as of August 2014, this practical book will demonstrate proven methods for anonymizing health data to help your organization share meaningful datasets, without exposing patient identity. Leading experts Khaled El Emam and Luk Arbuckle walk you through a risk-based methodology, using case studies from their efforts to de-identify hundreds of datasets. Clinical data is valuable for research and other types of analytics, but making it anonymous without compromising data quality is tricky. This book demonstrates techniques for handling different data types, based on the authors’ experiences with a maternal-child registry, inpatient discharge abstracts, health insurance claims, electronic medical record databases, and the World Trade Center disaster registry, among others. Understand different methods for working with cross-sectional and longitudinal datasets Assess the risk of adversaries who attempt to re-identify patients in anonymized datasets Reduce the size and complexity of massive datasets without losing key information or jeopardizing privacy Use methods to anonymize unstructured free-form text data Minimize the risks inherent in geospatial data, without omitting critical location-based health information Look at ways to anonymize coding information in health data Learn the challenge of anonymously linking related datasets

The Genome War

James Shreeve
The Genome War Book PDF

Author : James Shreeve
Publisher : Ballantine Books
Page : 418 pages
File Size : 41,6 Mb
Release : 2007-12-18
Category : Science
ISBN : 9780307417060

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The Genome War by James Shreeve Pdf

The long-awaited story of the science, the business, the politics, the intrigue behind the scenes of the most ferocious competition in the history of modern science—the race to map the human genome. On May 10, 1998, biologist Craig Venter, director of the Institute for Genomic Research, announced that he was forming a private company that within three years would unravel the complete genetic code of human life—seven years before the projected finish of the U.S. government’s Human Genome Project. Venter hoped that by decoding the genome ahead of schedule, he would speed up the pace of biomedical research and save the lives of thousands of people. He also hoped to become very famous and very rich. Calling his company Celera (from the Latin for “speed”), he assembled a small group of scientists in an empty building in Rockville, Maryland, and set to work. At the same time, the leaders of the government program, under the direction of Francis Collins, head of the National Human Genome Research Institute at the National Institutes of Health, began to mobilize an unexpectedly unified effort to beat Venter to the prize—knowledge that had the potential to revolutionize medicine and society. The stage was set for one of the most thrilling—and important—dramas in the history of science. The Genome War is the definitive account of that drama—the race for the greatest prize biology has had to offer, told by a writer with exclusive access to Venter’s operation from start to finish. It is also the story of how one man’s ambition created a scientific Camelot where, for a moment, it seemed that the competing interests of pure science and commercial profit might be gloriously reconciled—and the national repercussions that resulted when that dream went awry.