Reciprocity In Population Biobanks

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Reciprocity in Population Biobanks

Author : Ma’n H. Zawati
Publisher : Academic Press
ISBN 13 : 0323913482
Total Pages : 204 pages
Book Rating : 4.3/5 (239 download)

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Book Synopsis Reciprocity in Population Biobanks by : Ma’n H. Zawati

Download or read book Reciprocity in Population Biobanks written by Ma’n H. Zawati and published by Academic Press. This book was released on 2021-09-22 with total page 204 pages. Available in PDF, EPUB and Kindle. Book excerpt: Reciprocity in Population Biobanks: Relational Autonomy and the Duty to Inform in the Genomic Era begins by discussing how current judicial interpretation keeps standard of disclosure at the core of genomic research. The book then outlines multiple limitations individualistic autonomy faces in the context of gene and population biobanks, including an analysis of the complexities of benefit considerations in the research setting. Second, the book explores how individualistic autonomy fails to acknowledge the multilateral relationships implicated in genomic research, including those that affect the broader research community, research participants’ families, and the general public. In carrying out this analysis, this book pays special attention to alternative approaches and ways researchers, public health officials, and judicial bodies might interact in years to come. In other words, implementing an understanding of relational autonomy that acknowledges and sustains the multilateral relationships found in genomic research without compromising the rights of participants. In short, this book proposes a reconceived duty to inform for researchers and a new standard of disclosure that is more meaningful and impactful for research participants and researchers. Examines the limitations individualistic autonomy faces in the context of gene and population biobanks Proposes a reconceived duty to inform for researchers and a new standard of disclosure more meaningful to genomic research participants Suggests ways researchers, public health officials, and judicial bodies might interact to drive genomic research while still protecting research participants

Biobanking of Human Biospecimens

Author : Pierre Hainaut
Publisher : Springer
ISBN 13 : 3319551205
Total Pages : 239 pages
Book Rating : 4.3/5 (195 download)

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Book Synopsis Biobanking of Human Biospecimens by : Pierre Hainaut

Download or read book Biobanking of Human Biospecimens written by Pierre Hainaut and published by Springer. This book was released on 2017-06-06 with total page 239 pages. Available in PDF, EPUB and Kindle. Book excerpt: This volume is the first comprehensive text on human biobanking, authored by scientists and regulatory officers who have led the field over the past 10 years. It covers biobanking issues and its importance in advancing the field of research in cancer, cardiovascular, metabolic, and other diseases. Biobanks of human specimens have become the cornerstone for research on human health that harnesses the power of “omics” technologies to identify biomarkers for disease susceptibility. Biobanks are an essential component of the development of personalized medicine, which relies on the molecular analysis of biospecimens that are truly representative of individuals and of diseases. Over the past decade, biobanking has been the focus of major investments and developments aimed at developing appropriate infrastructure, methods, networking practice and evidence-based pre-analytical procedures. This volume explores topics including specimen storage, protocol design, specimen collection, pre-analytical processing and preservation, long-term storage, retrieval and separation, and distribution to analytical laboratory platforms. These activities are extremely complex and are essential for biomedical and biotechnological developments and this text provides critical information about biobanking for the development of future forms of medicine.

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. .

Human Genetic Biobanks in Asia

Author : Margaret Sleeboom-Faulkner
Publisher : Routledge
ISBN 13 : 1135784515
Total Pages : 222 pages
Book Rating : 4.1/5 (357 download)

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Book Synopsis Human Genetic Biobanks in Asia by : Margaret Sleeboom-Faulkner

Download or read book Human Genetic Biobanks in Asia written by Margaret Sleeboom-Faulkner and published by Routledge. This book was released on 2008-11-19 with total page 222 pages. Available in PDF, EPUB and Kindle. Book excerpt: This volume investigates human genetic biobanking and its regulation in various countries in Asia, including Japan, the People’s Republic of China, the Republic of China, Hong Kong, India and Indonesia.

Benefit Sharing

Author : Doris Schroeder
Publisher : Springer Science & Business Media
ISBN 13 : 9400762054
Total Pages : 250 pages
Book Rating : 4.4/5 (7 download)

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Book Synopsis Benefit Sharing by : Doris Schroeder

Download or read book Benefit Sharing written by Doris Schroeder and published by Springer Science & Business Media. This book was released on 2013-05-31 with total page 250 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biomedical research is increasingly carried out in low- and middle-income countries. International consensus has largely been achieved around the importance of valid consent and protecting research participants from harm. But what are the responsibilities of researchers and funders to share the benefits of their research with research participants and their communities? After setting out the legal, ethical and conceptual frameworks for benefit sharing, this collection analyses seven historical cases to identify the ethical and policy challenges that arise in relation to benefit sharing. A series of recommendations address possible ways forward to achieve justice for research participants in low- and middle-income countries.

Reproductive Technologies and Biobanking for the Conservation of Amphibians

Author : Andy J. Kouba
Publisher : CSIRO PUBLISHING
ISBN 13 : 1486313353
Total Pages : 450 pages
Book Rating : 4.4/5 (863 download)

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Book Synopsis Reproductive Technologies and Biobanking for the Conservation of Amphibians by : Andy J. Kouba

Download or read book Reproductive Technologies and Biobanking for the Conservation of Amphibians written by Andy J. Kouba and published by CSIRO PUBLISHING. This book was released on 2022-10-03 with total page 450 pages. Available in PDF, EPUB and Kindle. Book excerpt: How to decelerate loss of global biodiversity is one of the greatest challenges of our generation. Reproductive technologies have enormous potential to assist the recovery of species by enhancing reproductive output, facilitating genetic management, and supporting reintroduction of threatened species. Of particular value are cryopreservation technologies coupled with the establishment of global gene banks to conserve, in perpetuity, the remaining extant genetic diversity of threatened amphibians. Reproductive Technologies and Biobanking for the Conservation of Amphibians brings together leading experts in the field to provide a comprehensive overview of current best practices, summarise technological advancements, and present a framework for facilitating the integration of reproductive technologies and biobanking into conservation breeding programs for threatened amphibians. It is an invaluable reference for the next generation of conservation practitioners: captive breeding facilities, researchers, and policy-makers involved with biodiversity conservation.

Returning Individual Research Results to Participants

Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
ISBN 13 : 0309475171
Total Pages : 399 pages
Book Rating : 4.3/5 (94 download)

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Book Synopsis Returning Individual Research Results to Participants by : National Academies of Sciences, Engineering, and Medicine

Download or read book Returning Individual Research Results to Participants written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-09-23 with total page 399 pages. Available in PDF, EPUB and Kindle. Book excerpt: When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research resultsâ€"such as results with unknown validityâ€"and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholdersâ€"investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participantsâ€"and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations.

The Ethics of Research Biobanking

Author : Jan Helge Solbakk
Publisher : Springer Science & Business Media
ISBN 13 : 0387938729
Total Pages : 361 pages
Book Rating : 4.3/5 (879 download)

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Book Synopsis The Ethics of Research Biobanking by : Jan Helge Solbakk

Download or read book The Ethics of Research Biobanking written by Jan Helge Solbakk and published by Springer Science & Business Media. This book was released on 2009-07-31 with total page 361 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobanking, i.e. storage of biological samples or data emerging from such samples for diagnostic, therapeutic or research purposes, has been going on for decades. However, it is only since the mid 1990s that these activities have become the subject of considerable public attention, concern and debate. This shift in climate is due to several factors. The purpose of this book is to investigate some of the ethical, legal and social challenges raised by research biobanking in its different modern forms and formats. The issues raised by research biobanking in its modern form can be divided into four main clusters: how biological materials are entered into the bank; research biobanks as institutions; under what conditions researchers can access materials in the bank, and problems concerning ownership of biological materials and of intellectual property arising from such materials; and how the information is collected and stored, e.g. access-rights, disclosure, confidentiality, data security and data protection.

New Technologies and Human Rights

Author : Norberto Nuno Gomes de Andrade
Publisher : Routledge
ISBN 13 : 1317087909
Total Pages : 446 pages
Book Rating : 4.3/5 (17 download)

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Book Synopsis New Technologies and Human Rights by : Norberto Nuno Gomes de Andrade

Download or read book New Technologies and Human Rights written by Norberto Nuno Gomes de Andrade and published by Routledge. This book was released on 2016-05-13 with total page 446 pages. Available in PDF, EPUB and Kindle. Book excerpt: Whilst advances in biotechnology and information technology have undoubtedly resulted in better quality of life for mankind, they can also bring about global problems. The legal response to the challenges caused by the rapid progress of technological change has been slow and the question of how international human rights should be protected and promoted with respect to science and technology remains unexplored. The contributors to this book explore the political discourse and power relations of technological growth and human rights issues between the Global South and the Global North and uncover the different perspectives of both regions. They investigate the conflict between technology and human rights and the perpetuation of inequality and subjection of the South to the North. With emerging economies such as Brazil playing a major role in trade, investment and financial law, the book examines how human rights are affected in Southern countries and identifies significant challenges to reform in the areas of international law and policy.

Principles and Practice in Biobank Governance

Author : Mark Stranger
Publisher : Routledge
ISBN 13 : 1317075889
Total Pages : 316 pages
Book Rating : 4.3/5 (17 download)

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Book Synopsis Principles and Practice in Biobank Governance by : Mark Stranger

Download or read book Principles and Practice in Biobank Governance written by Mark Stranger and published by Routledge. This book was released on 2016-04-15 with total page 316 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rapid technological advances, the establishment of large-scale biobanks, and the exchange of data across international boundaries raise a variety of questions for regulators struggling with the problem of how to govern such stores of information and the processes connected with them. Engaging with the pressing issues of privacy, consent, access to data, and benefit sharing, Principles and Practice in Biobank Governance draws together the latest empirical research from the UK, Europe, America, Australia and Asia to focus on these challenges. Current models of governance are critiqued, principles and policies are debated, and new models and theoretical frameworks are presented through this intellectually stimulating, informative volume. This truly international volume offers new insights from a range of disciplinary perspectives and will be essential reading for policy makers and scholars across a range of social sciences, including sociology, bioethics, law and social policy.

Populations as Brands

Author : Aaro Tupasela
Publisher : Springer Nature
ISBN 13 : 3030785785
Total Pages : 235 pages
Book Rating : 4.0/5 (37 download)

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Book Synopsis Populations as Brands by : Aaro Tupasela

Download or read book Populations as Brands written by Aaro Tupasela and published by Springer Nature. This book was released on 2021-07-31 with total page 235 pages. Available in PDF, EPUB and Kindle. Book excerpt: In Populations as Brands Aaro Tupasela extends the fields of critical data studies and nation branding into the realm of state controlled biobanking and healthcare data. Using examples from two Nordic countries - Denmark and Finland – he explores how these countries have begun to market and brand their resources using methods and practices drawn from the commercial sector. Tupasela identifies changes during the past ten years that suggest that state collected and maintained resources have become the object of valuation practices. Tupasela argues that this phenomenon constitutes a novel form of nation branding in which relations between the states, individuals and the private sector are re-aligned. The author locates the historical underpinnings of population branding in the field of medical genetics starting in the early 1960s but transforming significantly during the 2010s into a professional marketing activity undertaken at multiple levels and sites. In studying this recent phenomenon, Tupasela provides examples of how marketing material has become increasingly professional and targeted towards a broader audience, including the public. The book will be of particular interest to scholars of critical data studies and nation branding, as well as students of science and technology studies, sociology and marketing.

Biobanks and Tissue Research

Author : Christian Lenk
Publisher : Springer Science & Business Media
ISBN 13 : 9400716737
Total Pages : 240 pages
Book Rating : 4.4/5 (7 download)

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Book Synopsis Biobanks and Tissue Research by : Christian Lenk

Download or read book Biobanks and Tissue Research written by Christian Lenk and published by Springer Science & Business Media. This book was released on 2011-07-30 with total page 240 pages. Available in PDF, EPUB and Kindle. Book excerpt: The research field of biobanks and tissue research is highly promising. Many projects around the globe are involved in the collection of human tissue and health data for research purposes. These initiatives are driven by the perspective of decisive breakthroughs in the knowledge of the genetic pathways involved in widespread diseases. However, there are considerable ethical and legal challenges to be considered as well. These challenges encompass the use of body material for research purposes, the misuse of genetic and other health data by third parties, trust in science and medicine, concerns regarding privacy, use of genetic data for forensic applications by the state and the police, and regulatory issues. This volume is divided into three parts: the inclusion of the public, the rights of donors and patients, examples and recommendations for the future of tissue research. It presents a comprehensive overview of the most important topics in the field by renowned scholars in medical ethics and biolaw.

Ethical Issues in Governing Biobanks

Author : Nikola Biller-Andorno
Publisher : Routledge
ISBN 13 : 1317141482
Total Pages : 296 pages
Book Rating : 4.3/5 (171 download)

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Book Synopsis Ethical Issues in Governing Biobanks by : Nikola Biller-Andorno

Download or read book Ethical Issues in Governing Biobanks written by Nikola Biller-Andorno and published by Routledge. This book was released on 2016-05-13 with total page 296 pages. Available in PDF, EPUB and Kindle. Book excerpt: Population genomics research drawing on genetic databases has expanded rapidly, with some of this information being combined in 'biobanks'. Managing this information in an appropriate way is a highly complex ethical issue in the health policy arena. This book combines theoretical and empirical research to analyze the areas of conflict and consensus in the regulatory and ethical frameworks that have been developed to govern biobanks. Ethicists from the Department of Ethics, Trade, Human Rights and Health Law (ETH) of the World Health Organization, the Institute of Biomedical Ethics of Geneva University and the Institute of Biomedical Ethics of the University of Zurich, with the support of the Geneva International Academic Network (GIAN), examine the conditions under which genetic databases can be established, kept, and made use of in an ethically acceptable way. In addition to a comprehensive review of the scientific literature and a comparative analysis of existing normative frameworks, they present the results of in-depth interviews with experts around the world concerning the most unresolved and controversial issues. The results of that study, combined with their normative analysis, leads to recommendations for a better international framework.

Biobanks

Author : Herbert Gottweis
Publisher : Routledge
ISBN 13 : 1134090277
Total Pages : 248 pages
Book Rating : 4.1/5 (34 download)

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Book Synopsis Biobanks by : Herbert Gottweis

Download or read book Biobanks written by Herbert Gottweis and published by Routledge. This book was released on 2008-04-28 with total page 248 pages. Available in PDF, EPUB and Kindle. Book excerpt: In recent years, a number of large population-based biobanks – genetic databases that combine genetic information derived from blood samples with personal data about environment, medical history, lifestyle or genealogy – have been set up in order to study the interface between disease, and genetic and environmental factors. Unsurprisingly, these studies have sparked a good deal of controversy and the ethical and social implications have been widely debated. Biobanks: Governance in Comparative Perspective is the first book to explore the political and governance implications of biobanks in Europe, the United States, Asia, and Australia. This book explores: the interrelated conditions needed for a biobank to be created and to exist the rise of the new bio-economy the redefinition of citizenship accompanying national biobank developments This groundbreaking book makes clear that biobanks are a phenomenon that cannot be disconnected from considerations of power, politics, and the reshaping of current practices in governance. It will be a valuable read for scholars and students of genetics, bioethics, risk, public health and the sociology of health and illness.

Molecular Epidemiology

Author : Paul A. Schulte
Publisher : Academic Press
ISBN 13 : 0323138578
Total Pages : 609 pages
Book Rating : 4.3/5 (231 download)

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Book Synopsis Molecular Epidemiology by : Paul A. Schulte

Download or read book Molecular Epidemiology written by Paul A. Schulte and published by Academic Press. This book was released on 2012-12-02 with total page 609 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book will serve as a primer for both laboratory and field scientists who are shaping the emerging field of molecular epidemiology. Molecular epidemiology utilizes the same paradigm as traditional epidemiology but uses biological markers to identify exposure, disease or susceptibility. Schulte and Perera present the epidemiologic methods pertinent to biological markers. The book is also designed to enumerate the considerations necessary for valid field research and provide a resource on the salient and subtle features of biological indicators.

Encyclopedia of Applied Ethics

Author :
Publisher : Academic Press
ISBN 13 : 0123739322
Total Pages : 3467 pages
Book Rating : 4.1/5 (237 download)

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Book Synopsis Encyclopedia of Applied Ethics by :

Download or read book Encyclopedia of Applied Ethics written by and published by Academic Press. This book was released on 2012-01-10 with total page 3467 pages. Available in PDF, EPUB and Kindle. Book excerpt: The Encyclopedia of Applied Ethics, Second Edition, Four Volume Set addresses both the physiological and the psychological aspects of human behavior. Carefully crafted, well written, and thoroughly indexed, the encyclopedia helps users - whether they are students just beginning formal study of the broad field or specialists in a branch of psychology - understand the field and how and why humans behave as we do. The work is an all-encompassing reference providing a comprehensive and definitive review of the field. A broad and inclusive table of contents ensures detailed investigation of historical and theoretical material as well as in-depth analysis of current issues. Several disciplines may be involved in applied ethics: one branch of applied ethics, for example, bioethics, is commonly explicated in terms of ethical, legal, social, and philosophical issues. Editor-in-Chief Ruth Chadwick has put together a group of leading contributors ranging from philosophers to practitioners in the particular fields in question, to academics from disciplines such as law and economics. The 376 chapters are divided into 4 volumes, each chapter falling into a subject category including Applied Ethics; Bioethics; Computers and Information Management; Economics/Business; Environmental Ethics; Ethics and Politics; Legal; Medical Ethics; Philosophy/Theories; Social; and Social/Media. Concise entries (ten pages on average) provide foundational knowledge of the field Each article will features suggested readings pointing readers to additional sources for more information, a list of related websites, a 5-10 word glossary and a definition paragraph, and cross-references to related articles in the encyclopedia Newly expanded editorial board and a host of international contributors from the US, Australia, Belgium, Canada, France, Germany, Ireland, Israel, Japan, Sweden, and the United Kingdom The 376 chapters are divided into 4 volumes, each chapter falling into a subject category including Applied Ethics; Bioethics; Computers and Information Management; Economics/Business; Environmental Ethics; Ethics and Politics; Legal; Medical Ethics; Philosophy/Theories; Social; and Social/Media

Secondary Findings in Genomic Research

Author :
Publisher : Academic Press
ISBN 13 : 0128167483
Total Pages : 246 pages
Book Rating : 4.1/5 (281 download)

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Book Synopsis Secondary Findings in Genomic Research by :

Download or read book Secondary Findings in Genomic Research written by and published by Academic Press. This book was released on 2020-02-29 with total page 246 pages. Available in PDF, EPUB and Kindle. Book excerpt: Secondary Findings in Genomic Research offers a single, highly accessible resource on interpreting, managing and disclosing secondary findings in genomic research. With chapters written by experts in the field, this book is the first to concisely explain the ethical and practical issues raised by secondary genomics findings for a multi and interdisciplinary audience of genomic researchers, translational scientists, clinicians, medical students, genetic counselors, ethicists, legal experts and law students, public policy specialists and regulators. Contributors from Europe, North America, and Asia effectively synthesize perspectives from a spectrum of different scientific, societal, and global contexts, and offer pragmatic approaches to a range of topics, including oversight, governance and policy surrounding secondary genomic results, criteria for identifying results for return, communication and consent, stakeholders’ attitudes and perspectives, disclosing results, and clinical, patient-centered protocols. Thoroughly addresses the scientific, ethical, practical and clinical issues raised by secondary findings resulting from genomic research, including active debate and challenges in the field Provides researchers, clinicians, regulators, and stakeholders with a holistic, interdisciplinary approach to interpreting, managing and disclosing secondary findings Brings together expert analysis from scholars across Europe, North America, and Asia representing a wide variety of scientific and societal contexts