Gdpr And Biobanking

Gdpr And Biobanking Book in PDF, ePub and Kindle version is available to download in english. Read online anytime anywhere directly from your device. Click on the download button below to get a free pdf file of Gdpr And Biobanking book. This book definitely worth reading, it is an incredibly well-written.

GDPR and Biobanking

Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature
GDPR and Biobanking Book PDF

Author : Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature
Publisher : Springer Nature
Page : 432 pages
File Size : 50,9 Mb
Release : 2021
Category : Biobanks
ISBN : 9783030493882

Get Book

GDPR and Biobanking by Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature Pdf

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. .

GDPR and Biobanking

Santa Slokenberga,Olga Tzortzatou,Jane Reichel
GDPR and Biobanking Book PDF

Author : Santa Slokenberga,Olga Tzortzatou,Jane Reichel
Publisher : Springer
Page : 432 pages
File Size : 42,6 Mb
Release : 2021-01-23
Category : Law
ISBN : 3030493873

Get Book

GDPR and Biobanking by Santa Slokenberga,Olga Tzortzatou,Jane Reichel Pdf

Discrepancies in biobank research regulations are among the most significant hurdles to effective research collaboration. The General Data Protection Regulation (GDPR) has established stringent requirements for the processing of health and genetic data, while simultaneously allowing considerable multi-level exceptions for the purposes of scientific research. In addition to directly applicable exceptions, the GDPR places the regulatory responsibility for further defining how the Member States strike a balance between the individuals' rights and the public interest in research within their national legal orders. Since Member States' approaches to the trade-off between data subjects' rights on the one hand, and appropriate safeguards on the other, differ according to their ethical and legal traditions, their data protection requirements for research also differ considerably. This book pursues a comprehensive approach to determine how the GDPR affects regulatory regimes on the use of personal data in biobanking research, with a particular focus on the balance between individuals' rights, public interest and scientific research. In this regard, it has two main goals: first, to scrutinize the GDPR research regime, its objective and constitutive elements, the impact it has on biobanking, and its role in a changing EU landscape post-Brexit; and second, to examine how various exceptions have been operationalized nationally, and what challenges and opportunities this diversification entails. The book not only captures the complexity GDPR creates for biobanking, but also sheds light on various approaches to tackling the corresponding challenges. It offers the first comprehensive analysis of GDPR for biobanking, and the most up-to-date overview of the national biobank regulatory frameworks in Europe.

GDPR Requirements for Biobanking Activities Across Europe

Valentina Colcelli,Roberto Cippitani,Christoph Brochhausen-Delius,Rainer Arnold
GDPR Requirements for Biobanking Activities Across Europe Book PDF

Author : Valentina Colcelli,Roberto Cippitani,Christoph Brochhausen-Delius,Rainer Arnold
Publisher : Springer Nature
Page : 627 pages
File Size : 54,9 Mb
Release : 2024-01-27
Category : Law
ISBN : 9783031429446

Get Book

GDPR Requirements for Biobanking Activities Across Europe by Valentina Colcelli,Roberto Cippitani,Christoph Brochhausen-Delius,Rainer Arnold Pdf

The book deals with the effective operation of the rules related to biomedical research and pays attention to the activities of the national legislatures of the 27 Member States in the field of scientific research. This multilevel system has an impact on biobanking activity. The book answers questions realized by operators on the main biobanks around the EU in the field of GDPR. The authors and editors used the questions born from brainstorming among members of the Association European, Middle East & Africa for Biopreservation and Biobanking (ESBB) to offer to the operators in biobanking activity and researchers quickly answer to their daily questions, but with authors highest quality. Further the book provides a comprehensive review of the rapidly expanding field of biobanking. It provides researchers and scholars working on biobanking and bio-sharing and more in general in the university hospitals and clinical trial consortiums, and companies, biomedical researchers, but also jurists and the professionals (in particular judges, lawyers, officers) an instrument rigorous but easy to use of the GDPR in the case of biobanking activities. The book identifies a methodological path to tackle the legal or ethical problem on a specific scientific-technological to verify existing solutions and give ideas for future applications. The importance of the legal solution influences the implementation of the development of the biobanking activity service itself.

Protecting Genetic Privacy in Biobanking through Data Protection Law

Dara Hallinan
Protecting Genetic Privacy in Biobanking through Data Protection Law Book PDF

Author : Dara Hallinan
Publisher : Oxford University Press
Page : 305 pages
File Size : 50,9 Mb
Release : 2021-03-11
Category : Law
ISBN : 9780192650399

Get Book

Protecting Genetic Privacy in Biobanking through Data Protection Law by Dara Hallinan Pdf

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.

GDPR Requirements for Biobanking Activities Across Europe

Valentina Colcelli,Roberto Cippitani,Christoph Brochhausen-Delius,Rainer Arnold
GDPR Requirements for Biobanking Activities Across Europe Book PDF

Author : Valentina Colcelli,Roberto Cippitani,Christoph Brochhausen-Delius,Rainer Arnold
Publisher : Springer
Page : 0 pages
File Size : 42,8 Mb
Release : 2023-12-25
Category : Law
ISBN : 3031429435

Get Book

GDPR Requirements for Biobanking Activities Across Europe by Valentina Colcelli,Roberto Cippitani,Christoph Brochhausen-Delius,Rainer Arnold Pdf

The book deals with the effective operation of the rules related to biomedical research and pays attention to the activities of the national legislatures of the 27 Member States in the field of scientific research. This multilevel system has an impact on biobanking activity. The book answers questions realized by operators on the main biobanks around the EU in the field of GDPR. The authors and editors used the questions born from brainstorming among members of the Association European, Middle East & Africa for Biopreservation and Biobanking (ESBB) to offer to the operators in biobanking activity and researchers quickly answer to their daily questions, but with authors highest quality. Further the book provides a comprehensive review of the rapidly expanding field of biobanking. It provides researchers and scholars working on biobanking and bio-sharing and more in general in the university hospitals and clinical trial consortiums, and companies, biomedical researchers, but also jurists and the professionals (in particular judges, lawyers, officers) an instrument rigorous but easy to use of the GDPR in the case of biobanking activities. The book identifies a methodological path to tackle the legal or ethical problem on a specific scientific-technological to verify existing solutions and give ideas for future applications. The importance of the legal solution influences the implementation of the development of the biobanking activity service itself.

Fundamentals of Clinical Data Science

Pieter Kubben,Michel Dumontier,Andre Dekker
Fundamentals of Clinical Data Science Book PDF

Author : Pieter Kubben,Michel Dumontier,Andre Dekker
Publisher : Springer
Page : 219 pages
File Size : 42,7 Mb
Release : 2018-12-21
Category : Medical
ISBN : 9783319997131

Get Book

Fundamentals of Clinical Data Science by Pieter Kubben,Michel Dumontier,Andre Dekker Pdf

This open access book comprehensively covers the fundamentals of clinical data science, focusing on data collection, modelling and clinical applications. Topics covered in the first section on data collection include: data sources, data at scale (big data), data stewardship (FAIR data) and related privacy concerns. Aspects of predictive modelling using techniques such as classification, regression or clustering, and prediction model validation will be covered in the second section. The third section covers aspects of (mobile) clinical decision support systems, operational excellence and value-based healthcare. Fundamentals of Clinical Data Science is an essential resource for healthcare professionals and IT consultants intending to develop and refine their skills in personalized medicine, using solutions based on large datasets from electronic health records or telemonitoring programmes. The book’s promise is “no math, no code”and will explain the topics in a style that is optimized for a healthcare audience.

Building Continents of Knowledge in Oceans of Data: The Future of Co-Created EHealth

A. Ugon,D. Karlsson,G.O. Klein
Building Continents of Knowledge in Oceans of Data The Future of Co Created EHealth Book PDF

Author : A. Ugon,D. Karlsson,G.O. Klein
Publisher : IOS Press
Page : 996 pages
File Size : 50,7 Mb
Release : 2018-05-18
Category : Medical
ISBN : 9781614998525

Get Book

Building Continents of Knowledge in Oceans of Data: The Future of Co-Created EHealth by A. Ugon,D. Karlsson,G.O. Klein Pdf

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.

Handbook on European data protection law

Council of Europe,European Union Agency for Fundamental Rights
Handbook on European data protection law Book PDF

Author : Council of Europe,European Union Agency for Fundamental Rights
Publisher : Council of Europe
Page : 402 pages
File Size : 45,8 Mb
Release : 2018-04-15
Category : Political Science
ISBN : 9789287198495

Get Book

Handbook on European data protection law by Council of Europe,European Union Agency for Fundamental Rights Pdf

The rapid development of information technology has exacerbated the need for robust personal data protection, the right to which is safeguarded by both European Union (EU) and Council of Europe (CoE) instruments. Safeguarding this important right entails new and significant challenges as technological advances expand the frontiers of areas such as surveillance, communication interception and data storage. This handbook is designed to familiarise legal practitioners not specialised in data protection with this emerging area of the law. It provides an overview of the EU’s and the CoE’s applicable legal frameworks. It also explains key case law, summarising major rulings of both the Court of Justice of the European Union and the European Court of Human Rights. In addition, it presents hypothetical scenarios that serve as practical illustrations of the diverse issues encountered in this ever-evolving field.

Genetic Privacy

Graeme Laurie
Genetic Privacy Book PDF

Author : Graeme Laurie
Publisher : Cambridge University Press
Page : 363 pages
File Size : 47,7 Mb
Release : 2002-05-16
Category : Law
ISBN : 9781139431538

Get Book

Genetic Privacy by Graeme Laurie Pdf

The phenomenon of the New Genetics raises complex social problems, particularly those of privacy. This book offers ethical and legal perspectives on the questions of a right to know and not to know genetic information from the standpoint of individuals, their relatives, employers, insurers and the state. Graeme Laurie provides a unique definition of privacy, including a concept of property rights in the person, and argues for stronger legal protection of privacy in the shadow of developments in human genetics. He challenges the role and the limits of established principles in medical law and ethics, including respect for patient autonomy and confidentiality. This book will interest lawyers, philosophers and doctors concerned both with genetic information and issues of privacy; it will also interest genetic counsellors, researchers, and policy makers worldwide for its practical stance on dilemmas in modern genetic medicine.

Chesley's Hypertensive Disorders in Pregnancy

Robert N. Taylor,James M. Roberts,F. Gary Cunningham,Marshall D. Lindheimer
Chesley s Hypertensive Disorders in Pregnancy Book PDF

Author : Robert N. Taylor,James M. Roberts,F. Gary Cunningham,Marshall D. Lindheimer
Publisher : Elsevier
Page : 484 pages
File Size : 45,9 Mb
Release : 2014-08-28
Category : Science
ISBN : 9780124079458

Get Book

Chesley's Hypertensive Disorders in Pregnancy by Robert N. Taylor,James M. Roberts,F. Gary Cunningham,Marshall D. Lindheimer Pdf

Chesley’s Hypertensive Disorders in Pregnancy continues its tradition as one of the beacons to guide the field of preeclampsia research, recognized for its uniqueness and utility. Hypertensive disorders remain one the major causes of maternal and fetal morbidity and death. It is also a leading cause of preterm birth now known to be a risk factor in remote cardiovascular disease. Despite this the hypertensive disorders remain marginally studied and management is often controversial. The fourth edition of Chesley’s Hypertensive Disorders in Pregnancy focuses on prediction, prevention, and management for clinicians, and is an essential reference text for clinical and basic investigators alike. Differing from other texts devoted to preeclampsia, it covers the whole gamut of high blood pressure, and not just preeclampsia. Features new chapters focusing on recent discoveries in areas such as fetal programming, genomics/proteomics, and angiogenesis Includes extensive updates to chapters on epidemiology, etiological considerations, pathophysiology, prediction, prevention, and management Discusses the emerging roles of metabolic syndrome and obesity and the increasing incidence of preeclampsia Each section overseen by one of the editors; each chapter co-authored by one of the editors, ensuring coherence throughout book

The Ethics of Medical Data Donation

Luciano Floridi,Jenny Krutzinna
The Ethics of Medical Data Donation Book PDF

Author : Luciano Floridi,Jenny Krutzinna
Publisher : Unknown
Page : 198 pages
File Size : 48,6 Mb
Release : 2020-10-08
Category : Medical
ISBN : 1013273508

Get Book

The Ethics of Medical Data Donation by Luciano Floridi,Jenny Krutzinna Pdf

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one's own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. This work was published by Saint Philip Street Press pursuant to a Creative Commons license permitting commercial use. All rights not granted by the work's license are retained by the author or authors.

Data Matters

National Academies of Sciences, Engineering, and Medicine,Policy and Global Affairs,Government-University-Industry Research Roundtable,Planning Committee for the Workshop on Ethics, Data, and International Research Collaboration in a Changing World
Data Matters Book PDF

Author : National Academies of Sciences, Engineering, and Medicine,Policy and Global Affairs,Government-University-Industry Research Roundtable,Planning Committee for the Workshop on Ethics, Data, and International Research Collaboration in a Changing World
Publisher : National Academies Press
Page : 103 pages
File Size : 40,9 Mb
Release : 2019-01-28
Category : Science
ISBN : 9780309482479

Get Book

Data Matters by National Academies of Sciences, Engineering, and Medicine,Policy and Global Affairs,Government-University-Industry Research Roundtable,Planning Committee for the Workshop on Ethics, Data, and International Research Collaboration in a Changing World Pdf

In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.

Group Privacy

Linnet Taylor,Luciano Floridi,Bart van der Sloot
Group Privacy Book PDF

Author : Linnet Taylor,Luciano Floridi,Bart van der Sloot
Publisher : Springer
Page : 237 pages
File Size : 53,6 Mb
Release : 2016-12-28
Category : Philosophy
ISBN : 9783319466088

Get Book

Group Privacy by Linnet Taylor,Luciano Floridi,Bart van der Sloot Pdf

The goal of the book is to present the latest research on the new challenges of data technologies. It will offer an overview of the social, ethical and legal problems posed by group profiling, big data and predictive analysis and of the different approaches and methods that can be used to address them. In doing so, it will help the reader to gain a better grasp of the ethical and legal conundrums posed by group profiling. The volume first maps the current and emerging uses of new data technologies and clarifies the promises and dangers of group profiling in real life situations. It then balances this with an analysis of how far the current legal paradigm grants group rights to privacy and data protection, and discusses possible routes to addressing these problems. Finally, an afterword gathers the conclusions reached by the different authors and discuss future perspectives on regulating new data technologies.

Ethics, Law and Governance of Biobanking

Deborah Mascalzoni
Ethics Law and Governance of Biobanking Book PDF

Author : Deborah Mascalzoni
Publisher : Springer
Page : 277 pages
File Size : 45,5 Mb
Release : 2015-01-22
Category : Medical
ISBN : 9789401795739

Get Book

Ethics, Law and Governance of Biobanking by Deborah Mascalzoni Pdf

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.

The EU General Data Protection Regulation (GDPR)

Christopher Kuner
The EU General Data Protection Regulation GDPR Book PDF

Author : Christopher Kuner
Publisher : Oxford University Press, USA
Page : 1360 pages
File Size : 55,9 Mb
Release : 2019-06-13
Category : Law
ISBN : 0198826494

Get Book

The EU General Data Protection Regulation (GDPR) by Christopher Kuner Pdf

This new book provides an article-by-article commentary on the new EU General Data Protection Regulation. Adopted in April 2016 and applicable from May 2018, the GDPR is the centrepiece of the recent reform of the EU regulatory framework for protection of personal data. It replaces the 1995 EU Data Protection Directive and has become the most significant piece of data protection legislation anywhere in the world. The book is edited by three leading authorities and written by a team of expert specialists in the field from around the EU and representing different sectors (including academia, the EU institutions, data protection authorities, and the private sector), thus providing a pan-European analysis of the GDPR. It examines each article of the GDPR in sequential order and explains how its provisions work, thus allowing the reader to easily and quickly elucidate the meaning of individual articles. An introductory chapter provides an overview of the background to the GDPR and its place in the greater structure of EU law and human rights law. Account is also taken of closely linked legal instruments, such as the Directive on Data Protection and Law Enforcement that was adopted concurrently with the GDPR, and of the ongoing work on the proposed new E-Privacy Regulation.