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Trust In Biobank Research
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Book Synopsis Trust in Biobanking by : Peter Dabrock
Download or read book Trust in Biobanking written by Peter Dabrock and published by Springer Science & Business Media. This book was released on 2012-02-22 with total page 267 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobanks are promising instruments of biomedical research and of transnational medicine in particular. Ethical, legal and social issues associated with biobanking, however, have recently led to a more critical view on this concept. All efforts addressing these concerns have been grounded on well-established standards of biomedical ethics such as informed consent procedures, protection of individual autonomy, benefit sharing etc. By additionally highlighting the widely neglected aspect of trust, this book aims at broadening the horizon of the ELSI-debate and thus filling a gap in current research on biobanking. The contributions of leading experts and junior researchers cover a wide field of disciplines relevant for biobanking including law, ethics, medicine, public health, social sciences, philosophy and theology.
Book Synopsis Trust in Biobank Research by : Linus Johnsson
Download or read book Trust in Biobank Research written by Linus Johnsson and published by . This book was released on 2013 with total page 142 pages. Available in PDF, EPUB and Kindle. Book excerpt:
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 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 Trust and Consequences by : Cyan James
Download or read book Trust and Consequences written by Cyan James and published by . This book was released on 2014 with total page 132 pages. Available in PDF, EPUB and Kindle. Book excerpt: The functions and nature of trust have been widely explored within the context of biobanks. As an established body of literature demonstrates, trust is believed vital for conducting modern research in which thousands of human tissue specimens are linked with de-identified information from medical records in a "Big Data" approach to finding genomic patterns and correlations behind disease manifestations. Without trust, the literature holds, potential donors are liable to refuse donation out of fear of weak data security or of researcher misconduct. With transparency, security, oversight, and proper engagement practices, biobanks hope to secure donor trust. Trust is also important, albeit much less examined, in health care learning systems where a similar situation--researchers seeking to conduct research with subjects recruited within clinical spaces--prevails. Both biobanks and health learning systems are becoming increasingly popular means of finding answers to biomedical problems, and how trust functions in these settings cannot be overlooked. Purpose: This dissertation aims to 1) examine stakeholder preferences, including those particular to trust and patient consent and engagement preferences, during the establishment of the Northwest BioTrust, a biorepository resource local to Seattle, WA, 2) qualitatively analyze IRB and patient views on trust as they apply to the health care learning model, and 3) explore significant policy ramifications remaining to be explored within the literature on trust in biomedical spaces. The overarching purpose of the project is to better inform research practices, to promote research obligations in trust-building ways, and to strengthen our research ecosystem. My methods include: 1) semi-structured interviews with local biobanking experts and stakeholders, a focus group of King County citizens, and a systematic literature review spanning work published from 2000-2010 focusing on elements of trust and communication methods involving biobank donors and esearch participants, 2) qualitative content analysis of focus groups at leading Northwest clinics convened to discuss the ethics of research on medical practices, and 3) the linked advancement of a normative argument based on relational ethics. Trust is critical, and in clinical spaces, potential participants prefer trust to be established relationally with one's care professionals, instead of with researchers or within research contexts; this characteristic adds important considerations to ongoing trust-building policy, particularly with regards to health learning systems. Trust is relational and not simply transactional. Though consent forms are the most common way of seeking to build trust and of encapsulating donor and researcher expectations and duties, they fail to capture several elements of trust-building that merit consideration. Researchers should examine their assumptions about the regulatory and ethical duties they must discharge in the light of relational ethics.
Book Synopsis Ethics, Law and Governance of Biobanking by : Deborah Mascalzoni
Download or read book Ethics, Law and Governance of Biobanking written by Deborah Mascalzoni and published by Springer. This book was released on 2015-01-22 with total page 275 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks. Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent? An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time to turn the ship around. Biobank researchers have a moral responsibility to look at and assess their work in relation to the bigger picture: the shared norms and values of current society. Research ethics shouldn’t only be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills.
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.
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: This groundbreaking book makes it clear that biobanks are a phenomenon that cannot be disconnected from considerations of power, politics and the reshaping of current practices in governance.
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 317 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.
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 355 pages. Available in PDF, EPUB and Kindle. Book excerpt: This volume investigates human genetic biobanking and its regulation in various Asian countries and areas, including Japan, Mainland China, Taiwan, Hong Kong, India and Indonesia.. It sheds light on how cultural, socio-political and economic factors influence the set-up of bioethical regulation for human genetic biobanks and how bioethical sensitivities surrounding biobanks are handled. Apart from placing discourses of trust in an international perspective, the comparative materials presented in this volume also put into perspective the concepts of genetic theft and exploitation, and genetic wealth and trust. This collection contains case studies of biobanking practices in societies with different needs and welfare levels, and provides insights into government strategies towards genetic resources by examining bioethics as practised at home.
Book Synopsis Trust and Integrity in Biomedical Research by : Thomas H. Murray
Download or read book Trust and Integrity in Biomedical Research written by Thomas H. Murray and published by JHU Press. This book was released on 2010-09 with total page 286 pages. Available in PDF, EPUB and Kindle. Book excerpt: Highly Commended in the Basis of Medicine, 2011 BMA Medical Book Awards. British Medical Association News of financial entanglements among biomedical companies and researchers has increasingly called into question the worth and integrity of medical studies, nearly three-fifths of which are funded by industry. This volume assesses the ethical, quantitative, and qualitative questions posed by the current financing of biomedical research. The ten essays collected here reflect the wide range of opinions about perceived financial conflicts of interest in medical studies. The opening section provides an overview of the issue, describing the origins of, and concerns raised by, dubious financial arrangements; explaining how certain common situations intensify problematic funding structures; weighing the risks and benefits of commercialized research funding; and detailing the nature, extent, and consequences of the present relationship among academe, government, and industry in the health sciences. The second section compares how the idea of conflicts of interest differs in biomedical research, legal work, and journalism. It includes a challenging look at the term itself and an argument for managed financial incentives. The final section describes and analyzes the existing regulatory regime, poses questions and directions for future self and external regulation, and provides perspectives from a third-party research company. This considered, balanced discussion will interest scholars of bioethics, public health, and health policy.
Book Synopsis Global Genes, Local Concerns by : Timo Minssen
Download or read book Global Genes, Local Concerns written by Timo Minssen and published by Edward Elgar Publishing. This book was released on 2019 with total page 304 pages. Available in PDF, EPUB and Kindle. Book excerpt: With interdisciplinary chapters written by lawyers, sociologists, doctors and biobank practitioners, Global Genes, Local Concerns identifies and discusses the most pressing issues in contemporary biobanking. Addressing pressing questions such as how do national biobanks best contribute to translational research and how could academic and industrial exploitation, ownership and IPR issues be addressed and facilitated, this book contributes to the continued development of international biobanking by highlighting and analysing the complexities in this important area of research.
Book Synopsis Comparative Issues in the Governance of Research Biobanks by : Giovanni Pascuzzi
Download or read book Comparative Issues in the Governance of Research Biobanks written by Giovanni Pascuzzi and published by Springer Science & Business Media. This book was released on 2013-01-30 with total page 334 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the last few years, the boom in biobanking has prompted a lively debate on a host of interrelated legal issues, such as the Gordian knot of the ownership of biological materials, as well as privacy concerns. The latter are due to the difficulty of accepting that biological samples must be completely anonymous without making it practically impossible to exploit their information potential. The issues also include the delicate role and the changing content of the donor’s “informed consent” as the main legal tool that may serve to link the privacy and property interests of donors with the research interests and the set of principles that should be at the core of the biobanking practice. Lastly, the IP issues and the patentability of biological samples as well as the protection of databases storing genetic information obtained from the samples are covered. Collecting eighteen essays written by eminent scholars from Italy, the US, the UK and Canada, this book provides new solutions to these problems. From a comparative viewpoint, it explores the extent to which digital technology may assist in tackling the numerous regulatory issues raised by the practice of biobanking for research purposes. These issues may be considered and analyzed under the traditional paradigms of Property, Privacy, Informed Consent and Intellectual Property.
Book Synopsis Workshop Report by : UK Biobank Ethics and Governance Council
Download or read book Workshop Report written by UK Biobank Ethics and Governance Council and published by . This book was released on 2010 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis The Practice of Autonomy by : Carl Schneider
Download or read book The Practice of Autonomy written by Carl Schneider and published by Oxford University Press, USA. This book was released on 1998 with total page 346 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Exploring what patients do want gives direction to the author's inquiry into what they should want. What patients want, he believes, is properly more complex and ambiguous than being "empowered." In this book he charts that ambiguity to take the autonomy principle past current pieties into the uncertain realities of the sick room and the hospital ward." "The Practice of Autonomy is a sympathetic but trenchant study of the animating principle of modern bioethics. It speaks with freshness, insight, and even passion to bioethicists and moral philosophers (about their theories), to lawyers (about their methods), to medical sociologists (about their subject), to policy-makers (about their ambitions), to doctors (about their work), and to patients (about their lives)."--BOOK JACKET.
Book Synopsis Autonomy and Trust in Bioethics by : Onora O'Neill
Download or read book Autonomy and Trust in Bioethics written by Onora O'Neill and published by Cambridge University Press. This book was released on 2002-04-18 with total page 232 pages. Available in PDF, EPUB and Kindle. Book excerpt: Argues against the conceptions of individual autonomy which are widely relied on in bioethics.
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.
