Reciprocity In Population Biobanks

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Reciprocity In Population Biobanks

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Author : Ma'n H. Zawati
language : en
Publisher: Academic Press
Release Date : 2021-09-22

Reciprocity In Population Biobanks written by Ma'n H. Zawati and has been published by Academic Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2021-09-22 with Medical categories.

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

Population Biobanks And The Principle Of Reciprocity

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Author : Ma'n H. Zawati
language : en
Publisher:
Release Date : 2018

Population Biobanks And The Principle Of Reciprocity written by Ma'n H. Zawati and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2018 with categories.

Samples and data from population studies are stored for long periods of time, and can be accessed by national and international researchers to further their own studies and contribute to their understanding of the impact of a number of factors (e.g., environment, lifestyle) on common diseases and their progression. Part 2 of this Chapter discusses the nature of the researcher's duty to inform, which is the result of an individualistic conception of autonomy. Parts 3 and 4 review the restrictive conception of autonomy, and concludes that it is rooted in a unilateral approach that is incongruous with the nature of biobank genomic research. Finally, part 5 proposes that autonomy be complemented by the principle of reciprocity, which would not only create a fair and balanced relationship between researchers and participants, but would also recognize the public as a key contributor to genomic research.

Biobanking Of Human Biospecimens

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Author : Pierre Hainaut
language : en
Publisher: Springer
Release Date : 2017-06-06

Biobanking Of Human Biospecimens written by Pierre Hainaut and has been published by Springer this book supported file pdf, txt, epub, kindle and other format this book has been release on 2017-06-06 with Medical categories.

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.​

Human Genetic Biobanks In Asia

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Author : Margaret Sleeboom-Faulkner
language : en
Publisher: Routledge
Release Date : 2008-11-19

Human Genetic Biobanks In Asia written by Margaret Sleeboom-Faulkner and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2008-11-19 with Political Science categories.

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.

Promoting The Human In Law Policy And Medicine

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Author :
language : en
Publisher: BRILL
Release Date : 2024-11-11

Promoting The Human In Law Policy And Medicine written by and has been published by BRILL this book supported file pdf, txt, epub, kindle and other format this book has been release on 2024-11-11 with Law categories.

Professor Bartha Maria Knoppers stepped down from the Canada Research Chair in Law and Medicine at McGill University in April 2024, a post she held for more than 20 years. Professor Knoppers consistently prioritized “humanity” in her academic work and in policymaking. As such, she forged a strong intellectual legacy, notably through her work on the human right to science, genomic and health-related data sharing, genome editing, human reproductive technologies, stem cell research, the rights of children, and population health. This collection of essays honours her extraordinary academic contributions to law, policy, and medicine.

Of Research Participants And Population Biobanks

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Author : Ma'n Hilmi Zawati
language : en
Publisher:
Release Date : 2019

Of Research Participants And Population Biobanks written by Ma'n Hilmi Zawati and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2019 with categories.

"The principle of autonomy has been the cornerstone of the physician's duty to inform since paternalistic medical practices receded in the second half of the 20th century. One prevalent conception of autonomy claims that the extent of the duty to inform (and, by extension, the duty to disclose) is inversely proportional to an intervention's expected therapeutic benefit. Indeed, Canadian Courts have found that research participants are not in a therapeutic relationship. As a consequence, they do not stand to benefit as patients in a clinical setting would. This distinction, according to judicial interpretation, demands a more exacting standard of information disclosure, one in which researchers are required to provide participants a full and frank disclosure of all facts, opinions and probabilities, no matter how remote, as well as any other material information about the research. As research becomes increasingly longitudinal (analyzed and accessed over time), international (crossing boundaries and legal jurisdictions), and less directly focused on individuals, the feasibility of applying this standard is being called into question. Additionally, research has come to rely less on direct interventions and ever more on bioinformatics technologies that generate massive amounts of data. This is especially true in the case of population biobanks, which aim to study data and samples collected over an extended period and on the scale of entire populations. This thesis will demonstrate that the dominant jurisprudential interpretation of the standard of disclosure applicable in the research context has a conception of individualistic autonomy at its core. It will then outline the multiple limitations individualistic autonomy faces in the context of population biobanks. This is so for two reasons: first, it fails to recognize the complexities of benefit considerations in the research setting. Second, given its unidirectional aims (any interaction centres around the participant), individualistic autonomy fails to acknowledge the multilateral relationships necessarily implicated in population biobanking research, including those that implicate the broader research community and the general public. In carrying out this analysis, this thesis will pay special attention to alternative approaches and focus specifically on relational autonomy. It will demonstrate that for relational autonomy to be applied in the population biobanking context, it will need to be situated in a conceptual framework that practically describes, acknowledges and sustains the multilateral relationships found in this species of research, without also compromising the rights of participants. Using theoretical discussions, this thesis will argue that, despite certain limitations, the concept of reciprocity as a basis for relational autonomy will succeed to do just that. It will, moreover, form the basis of a reconceived duty to inform for researchers and a new standard of disclosure that is more meaningful to research participants. " --

Reproductive Technologies And Biobanking For The Conservation Of Amphibians

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Author : Aimee J. Silla
language : en
Publisher: CSIRO PUBLISHING
Release Date : 2022-10-03

Reproductive Technologies And Biobanking For The Conservation Of Amphibians written by Aimee J. Silla and has been published by CSIRO PUBLISHING this book supported file pdf, txt, epub, kindle and other format this book has been release on 2022-10-03 with Science categories.

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.

The Ethics Of Research Biobanking

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Author : Jan Helge Solbakk
language : en
Publisher: Springer Science & Business Media
Release Date : 2009-07-31

The Ethics Of Research Biobanking written by Jan Helge Solbakk and has been published by Springer Science & Business Media this book supported file pdf, txt, epub, kindle and other format this book has been release on 2009-07-31 with Medical categories.

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.

Biobanks In Low And Middle Income Countries Relevance Setup And Management

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Author : Karine Sargsyan
language : en
Publisher: Springer Nature
Release Date : 2022-03-15

Biobanks In Low And Middle Income Countries Relevance Setup And Management written by Karine Sargsyan and has been published by Springer Nature this book supported file pdf, txt, epub, kindle and other format this book has been release on 2022-03-15 with Science categories.

This book introduces the fundamentals of biobanking and guides through the practical planning thereof, with a special focus on the situation in low- and middle-income countries. On the example of the setup of a Ukrainian biobank the book discusses the main steps and aspects of successful biorepository implementation and management. Topics covered include collection, storage and shipping of samples, establishment of an IT system, development of a sustainability plan, and project and risk management. Furthermore, the importance of the formation of international biobanking societies such as the Ukraine Association of Biobanks is highlighted, and their main objectives and tasks are discussed. The book addresses life science and business professionals as well as national authorities who are interested in biobanking in general and in setting up a biobank in particular.

New Technologies And Human Rights

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Author : Norberto Nuno Gomes de Andrade
language : en
Publisher: Routledge
Release Date : 2016-05-13

New Technologies And Human Rights written by Norberto Nuno Gomes de Andrade and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2016-05-13 with Law categories.

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.