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Biobanking In The 21st Century
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Book Synopsis Biobanking in the 21st Century by : Feridoun Karimi-Busheri
Download or read book Biobanking in the 21st Century written by Feridoun Karimi-Busheri and published by Springer. This book was released on 2015-09-29 with total page 188 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobanking, an emerging field supported by academia, industry and health administrators alike, is distinctly different today from the practice that once defined it. The science of Biobanking, which initially involved simply storing blood or tissue samples in a freezer, is now a highly sophisticated field of research, and expected to grow exponentially over the next decade or two. This book aims to serve the purpose of further enriching the available literature on Biobanking, by offering unique and more useful collection of ideas for the future. The book outlines the experiences of developing modern Biobanking repositories in different countries, whilst covering specific topics regarding the many aspects of Biobanking. This book will be of interest to a wide range of readers including: academics, students, volunteers and advocates of patients’ rights.
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 Nature. This book was released on 2021-08-25 with total page 210 pages. Available in PDF, EPUB and Kindle. Book excerpt: Over the past 25 years, biobanks of human specimens have become a cornerstone for research on human health and have empowered the “omics “revolution that characterizes biomedical science in the XXIst Century. Today, biobanking of human specimens is a critical component of the interface between clinical practice and translational research, supporting the discovery and validation of new biomarkers of disease etiology, risk, early detection, diagnosis, prognosis, prediction and relapse. With the development of personalized medicine, biobanking of cryopreserved specimens has become standard practice in order to investigate genetic, transcriptomic, proteomic, metabolomics and immunological biomarkers useful to inform caregivers for therapeutic decisions. Data generated from biobanked specimens represent a rapidly growing and highly valuable resource, participating in the emergence of Big Data Medicine. With the development of large computing capabilities and artificial intelligence, data associated with biobanked specimens constitute a unique resource for the discovery and validation of new biomarkers and therapeutically actionable targets. Interconnecting, interoperating and sharing this data have become major issues for national health systems, raising enormous stakes as well as major societal, legal and cybersecurity challenges in terms of compliance with the protection of personal sensitive information. This book project is the second part of an initiative launched in 2012 to produce a published corpus of knowledge encompassing all aspects of human biobanking as a central practice for research and medicine. The first volume, published in 2017, is entitled: Human Biobanking: Principles and Practice. This first volume compiled a series of high level contributions overseeing the main developments that carried the progression of human biobanking as a research and biotechnological field over the past two decades. This new book project will constitute de facto Volume 2 of the same initiative, under the title: Biobanking of Human Biospecimens: lessons from 25 years of biobanking experience. Hence, the two volumes will share the same generic title (Biobanking of Human Biospecimens), with different subtitles, making clear that the two volumes are interrelated while highlighting their specificities in terms of what they actually cover. As a result, the two books are “twins” but can also be used independently of each other. The overarching aim of the two volumes of Biobanking of Human Biospecimens is to provide a published “one-stop shop” for state-of-the-art information on what constitutes the field of human biobanking, from conception of a biobank, standard operating procedures, ethical and societal aspects, governance, networking, interoperability and economic sustainability. This inclusive publication concept meets the needs of a vast readership, including scientists, doctors and technical staffs who are directly involved in biobanking operations, scientists in other disciplines that heavily rely on biobanking (such as genomics or proteomics), stakeholders and policy makers, and of course students for whom biobanking is becoming an important part of the training curriculum. So far, there has been a lack of major textbooks on biobanking. Documentation for biobanking is widely available through numerous publications, regulatory documents published by International or Governmental Agencies, and sets of recommendations essentially accessible through the Internet. However, it is difficult to access a single, top-of-the shelf reference that provides at a glance a large coverage of all aspects of human biobanking. Fulfilling this need is the main origin of the concept for this back-to-back publication project. To our knowledge, there is currently no other publication project with the same breath and scope as this one in the field of biobanking.
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. .
Book Synopsis Genomic Citizenship by : Ian McGonigle
Download or read book Genomic Citizenship written by Ian McGonigle and published by MIT Press. This book was released on 2021-08-24 with total page 221 pages. Available in PDF, EPUB and Kindle. Book excerpt: An anthropological study based on ethnographic work in Israel and Qatar explores the relationship between science, particularly genetics, and national identity. Based on ethnographic work in Israel and Qatar, two small Middle Eastern ethnonations with significant biomedical resources, Genomic Citizenship explores the relationship between science and identity. Ian McGonigle, originally trained as a biochemist, draws on anthropological theory, STS, intellectual history, critical theory, Middle Eastern studies, cultural studies, and critical legal studies. He connects biomedical research on ethnic populations to the political, economic, legal, and historical context of the state; to global trends in genetic medicine; and to the politics of identity in the context of global biomedical research. Genomic Citizenship is more an anthropology of scientific objects than an anthropology of scientists or an ethnography of the laboratory. McGonigle bases his untraditional project on traditional anthropological methods, including participant observation. Some of the most persuasive data in the book are from public records, legal and historical sources, published scientific papers, institutional reports, websites, and brochures. McGonigle discusses biological understandings of Jewishness, especially in relation to the intellectual history of Zionism and Jewish political thought, and considers the possibility of a novel application of genetics in assigning Israeli citizenship. He also describes developments in genetic medicine in Qatar and analyzes the Qatari Biobank in the context of Qatari nationalism and state-building projects. Considering possible consequences of findings on the diverse origins of the Qatari population for tribal identities, he argues that the nation cannot be defined as either a purely natural or biological entity. Rather, it is reified, reinscribed, and refracted through genomic research and discourse.
Book Synopsis Leading the 21st-Century Academic Library by : Bradford Lee Eden
Download or read book Leading the 21st-Century Academic Library written by Bradford Lee Eden and published by Rowman & Littlefield. This book was released on 2015-03-02 with total page 182 pages. Available in PDF, EPUB and Kindle. Book excerpt: Libraries of all types have undergone significant developments in the last few decades. The rate of change in the academic library, a presence for decades now, has been increasing in the first decade of this century. It is no exaggeration to claim that it is undergoing a top to bottom redefinition. Cataloging and reference remain central to its new role, and the circulation of books is still high though declining. Among the changes is the architecture of the library: when new libraries replace old or where renovation is occurring; the role of technology at every stage and in every library application; the management of serials – selection, shelving and budgeting; and in a gradual but irrevocable move to digital forms, altered allocation of resources including larger portions of the budget diverted to preservation, not only of aging books, a theme in the latter part of the last century, but of digital files – cultural, historical, personal. In brief, the academic library is dramatically different today than it was only ten years ago. And with it, the profession of the academic librarian is also undergoing significant changes. Managing digital resources in all its forms, from telecommunications to storage and access devices, is central to its new roles. Creating, curating and preserving digital information is also key to the new librarianship. And what about services to its clients? Here also we see dramatic change, particularly but not exclusively with guiding library users in the effective use of networked knowledge. Information literacy is a key term and skill in using the new tools of digital literacy: reading and writing, searching and extracting; and the new technologies that drive social networking – the Iphone, Ipad, and Ipod and its many imitators. We can’t expect the redefined academic library to assume its final shape any time soon, if ever, but the transformation is well underway. This series: Creating the 21st-Century Academic Library, will explore this topic from a number of different perspectives. Volume 1, Visionary Leadership and Futures, will begin the discussion by examining some of the new roles and directions academic libraries are taking.
Book Synopsis The Immortal Life of Henrietta Lacks by : Rebecca Skloot
Download or read book The Immortal Life of Henrietta Lacks written by Rebecca Skloot and published by Crown. This book was released on 2010-02-02 with total page 386 pages. Available in PDF, EPUB and Kindle. Book excerpt: #1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
Book Synopsis Personalized Medicine by : Barbara Prainsack
Download or read book Personalized Medicine written by Barbara Prainsack and published by NYU Press. This book was released on 2017-12-19 with total page 287 pages. Available in PDF, EPUB and Kindle. Book excerpt: Inside today's data-driven personalized medicine, and the time, effort, and information required from patients to make it a reality Medicine has been personal long before the concept of “personalized medicine” became popular. Health professionals have always taken into consideration the individual characteristics of their patients when diagnosing, and treating them. Patients have cared for themselves and for each other, contributed to medical research, and advocated for new treatments. Given this history, why has the notion of personalized medicine gained so much traction at the beginning of the new millennium? Personalized Medicine investigates the recent movement for patients’ involvement in how they are treated, diagnosed, and medicated; a movement that accompanies the increasingly popular idea that people should be proactive, well-informed participants in their own healthcare. While it is often the case that participatory practices in medicine are celebrated as instances of patient empowerment or, alternatively, are dismissed as cases of patient exploitation, Barbara Prainsack challenges these views to illustrate how personalized medicine can give rise to a technology-focused individualism, yet also present new opportunities to strengthen solidarity. Facing the future, this book reveals how medicine informed by digital, quantified, and computable information is already changing the personalization movement, providing a contemporary twist on how medical symptoms or ailments are shared and discussed in society. Bringing together empirical work and critical scholarship from medicine, public health, data governance, bioethics, and digital sociology, Personalized Medicine analyzes the challenges of personalization driven by patient work and data. This compelling volume proposes an understanding that uses novel technological practices to foreground the needs and interests of patients, instead of being ruled by them.
Download or read book Bio-Objects written by Niki Vermeulen and published by Routledge. This book was released on 2016-04-15 with total page 241 pages. Available in PDF, EPUB and Kindle. Book excerpt: Increasing knowledge of the biological is fundamentally transforming what life itself means and where its boundaries lie. New developments in the biosciences - especially through the molecularisation of life - are (re)shaping healthcare and other aspects of our society. This cutting edge volume studies contemporary bio-objects, or the categories, materialities and processes that are central to the configuring of 'life' today, as they emerge, stabilize and circulate through society. Examining a variety of bio-objects in contexts beyond the laboratory, Bio-Objects: Life in the 21st Century explores new ways of thinking about how novel bio-objects enter contemporary life, analysing the manner in which, among others, the boundaries between human and animal, organic and non-organic, and being 'alive' and the suspension of living, are questioned, destabilised and in some cases re-established. Thematically organised around questions of changing boundaries; the governance and regulation of bio-objects; and changing social, economic and political relations, this book presents rich new case studies from Europe that will be of interest to scholars of science and technology studies, social theory, sociology and law.
Book Synopsis Building Continents of Knowledge in Oceans of Data: The Future of Co-Created EHealth by : A. Ugon
Download or read book Building Continents of Knowledge in Oceans of Data: The Future of Co-Created EHealth written by A. Ugon and published by IOS Press. This book was released on 2018-05-18 with total page 996 pages. Available in PDF, EPUB and Kindle. Book excerpt: The domain of eHealth faces ongoing challenges to deliver 21st century healthcare. Digitalization, capacity building and user engagement with truly interdisciplinary and cross-domain collaboration are just a few of the areas which must be addressed. This book presents 190 full papers from the Medical Informatics Europe (MIE 2018) conference, held in Gothenburg, Sweden, in April 2018. The MIE conferences aim to enable close interaction and networking between an international audience of academics, health professionals, patients and industry partners. The title of this year’s conference is: Building Continents of Knowledge in Oceans of Data – The Future of Co-Created eHealth, and contributions cover a broad range of topics related to the digitalization of healthcare, citizen participation, data science, and changing health systems, addressed from the perspectives of citizens, patients and their families, healthcare professionals, service providers, developers and policy makers. The second part of the title in particular has attracted a large number of papers describing strategies to create, evaluate, adjust or deliver tools and services for improvements in healthcare organizations or to enable citizens to respond to the challenges of dealing with health systems. Papers are grouped under the headings: standards and interoperability, implementation and evaluation, knowledge management, decision support, modeling and analytics, health informatics education and learning systems, and patient-centered services. Attention is also given to development for sustainable use, educational strategies and workforce development, and the book will be of interest to both developers and practitioners of healthcare services.
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309475201 Total Pages :399 pages Book Rating :4.3/5 (94 download)
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 2018-08-23 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.
Book Synopsis Law and the Technologies of the Twenty-First Century by : Roger Brownsword
Download or read book Law and the Technologies of the Twenty-First Century written by Roger Brownsword and published by Cambridge University Press. This book was released on 2012-06-14 with total page 493 pages. Available in PDF, EPUB and Kindle. Book excerpt: A clear and comprehensive introduction for students studying key regulatory challenges posed by technologies in the twenty-first century. Co-authored by a leading scholar in the field with a new scholar to the area, it combines comprehensive knowledge with a fresh perspective. Essential reading for students of law and technology.
Book Synopsis The Marshall Plan Lessons Learned for the 21st Century by : OECD
Download or read book The Marshall Plan Lessons Learned for the 21st Century written by OECD and published by OECD Publishing. This book was released on 2008-09-15 with total page 139 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book examines the historical, diplomatic, economic, and strategic aspects of the European Recovery Program (ERP) - popularly known as the Marshall Plan.
Book Synopsis Personal Genome Medicine by : Michael J. Malinowski
Download or read book Personal Genome Medicine written by Michael J. Malinowski and published by Cambridge University Press. This book was released on 2023-08-31 with total page 479 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the years following FDA approval of direct-to-consumer, genetic-health-risk testing, millions of people in the United States have sent their DNA to companies to receive personal genetic health risk information without physician or other learned medical professional involvement. In Personal Genome Medicine, Michael J. Malinowski examines the ethical, legal, and social implications of this development. Drawing from the past and present of medicine in the U.S., Malinowski applies law, policy, public and private sector practices, and governing norms to analyze the commercial personal genome sequencing and testing sectors and to assess their impact on the future of U.S. medicine. Written in relatable and accessible language, the book also proposes regulatory reforms for government and medical professionals that will enable technological advancements while maintaining personal and public health standards.
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 Oxford University Press. This book was released on 2021-03-11 with total page 305 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobanks are critical infrastructure for medical research but they are also the subject of considerable ethical and legal uncertainty. Given that biobanks process large quantities of genomic data, questions have emerged as to how genetic privacy should be protected. What types of genetic privacy rights and rights holders should be protected and to what extent? Since 25th May 2018 the General Data Protection Regulation (GDPR) has applied and now occupies a key position in the European legal framework for the regulation of biobanking. This book takes an in-depth look at the function, problems, and opportunities presented by European data protection law under the GDPR as a framework for the protection of genetic privacy in biobanking in Europe. Hallinan argues that the substantive framework presented by the GDPR already offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking. The book further argues that, whilst numerous problems with this standard of protection are indeed identifiable, the GDPR offers the flexibility to accommodate solutions to these problems, as well as the procedural mechanisms to realise these solutions.
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.
Book Synopsis Biobanks in Healthcare by : Nicole Arrighi
Download or read book Biobanks in Healthcare written by Nicole Arrighi and published by John Wiley & Sons. This book was released on 2024-10-22 with total page 138 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Governing Intellectual Property Rights Within Publicly Funded Biobanks by : Rajam Neethu
Download or read book Governing Intellectual Property Rights Within Publicly Funded Biobanks written by Rajam Neethu and published by Kluwer Law International B.V.. This book was released on 2019-06-21 with total page 332 pages. Available in PDF, EPUB and Kindle. Book excerpt: Governing Intellectual Property Rights Within Publicly Funded Biobanks R. Neethu The boom in biobanks and health databases as research infrastructures have evoked various legal and ethical debates. Since then numerous new developments have emerged such as digitalization, big-data research and artificial intelligence which has important implications for biobank-based research and collaborations. This new paradigm offers new legal challenges for commercial involvement particularly within a publicly funded setting. In this innovative book, the author shows that securing maximum social benefit out of the knowledge emanating from the use of biobank resources lies in managing intellectual property inputs and outputs effectively in keeping with the values core to such research. Focusing on the challenges of involving intellectual property rights (IPRs) particularly in the precompetitive phase of biobank-based research, the book offers an extensive understanding of the role of different IPRs and identifies the gaps in the law and its implications for biobanks. The analysis covers important aspects in relation to biobanks such as: Digital integration and biomedical data storage; Ownership of biological samples; Commercialization and benefit sharing; Partnership models; Public sector research; Disposition of samples; Consent; Cross-border exchange; Trade secrecy; Privacy; Regulatory stewardship; Business strategies; Ethical considerations over biological resources; Patenting of inventions relating to personalized medicine; Ethical parameters within patent law; and Rights regarding genetic data and databases. The book includes observations, case studies and interviews conducted by the author. In conclusion, the author offers cogent recommendations for legal interoperability of IP rules and research practices designed to enhance the ability of biobanks to share, access and reuse data. This book is the first of its kind to explore the organizational and legislative choices for biobanks particularly while engaging in the protection of research results and technology transfer within a publicly funded setting. It will be of substantial interest to all stakeholders in biobanking, especially policymakers, biobankers and researchers working in the field of health law as well as for legal practitioners, academics and patient interest groups.
