Reciprocity in Population Biobanks

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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

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Author :
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

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Author :
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

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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

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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

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Author :
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

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Author :
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

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Author :
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

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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

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Publisher : Routledge
ISBN 13 : 1317075889
Total Pages : 317 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 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.

Populations as Brands

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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

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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

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Author :
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

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Author :
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: 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.

The Immortal Life of Henrietta Lacks

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Publisher : Crown
ISBN 13 : 0307589382
Total Pages : 386 pages
Book Rating : 4.3/5 (75 download)

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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.

Molecular Epidemiology

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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.

The Ethical and Legal Regulation of Human Tissue and Biobank Research in Europe

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Author :
Publisher : Universitätsverlag Göttingen
ISBN 13 : 3863950313
Total Pages : 183 pages
Book Rating : 4.8/5 (639 download)

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Book Synopsis The Ethical and Legal Regulation of Human Tissue and Biobank Research in Europe by : Nils Hoppe

Download or read book The Ethical and Legal Regulation of Human Tissue and Biobank Research in Europe written by Nils Hoppe and published by Universitätsverlag Göttingen. This book was released on 2011 with total page 183 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Human tissue and biobank research is of increasing importance for understanding the causes of widespread diseases and developing effective therapies. However, while the success of biobank research depends on the availability of a large number of samples and the consolidation of collections across country borders is very desirable from the perspective of researchers, the legal and ethical requirements for the procurement, storage and use of human tissue samples are rather heterogeneous across different countries. Moreover, the lack of comprehensive supranational regulation on human tissue and biobanking can be seen as posing a serious threat to transnational biomedical research. Against this background, it was one of the aims of the EU-funded Tiss.EU project ('Evaluation of Legislation and Related Guidelines on the Procurement, Storage and Transfer of Human Tissues and Cells in the European Union--an Evidence-Based Impact Analysis') to analyse the ethical and legal regulation of human tissue and biobank research across the 27 European Member States plus Switzerland. The results of nine international workshops and three conferences are gathered in this volume. While the country reports evaluate the implementation of ethical and legal guidelines at a national level, point out their strengths and deficits, and, where required, create an evidence base for the revision of said legislation, the conference reports address more general ethical and legal issues in this field. The volume is completed by a final presentation of project's results"--Publisher's description