Protecting Genetic Privacy In Biobanking Through Data Protection Law

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Protecting Genetic Privacy in Biobanking through Data Protection Law

Dara Hallinan

Author : Dara Hallinan
Publisher : Oxford University Press
Page : 305 pages
File Size : 53,9 Mb
Release : 2021-03-11
Category : Law
ISBN : 9780192650399

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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 and Biobanking

Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature

Author : Jane Reichel,Santa Slokenberga,Olga Tzortzatou,Springer Nature
Publisher : Springer Nature
Page : 432 pages
File Size : 50,7 Mb
Release : 2021
Category : Biobanks
ISBN : 9783030493882

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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. .

Protecting Genetic Privacy in Biobanking Through Data Protection Law

Dara Hallinan

Author : Dara Hallinan
Publisher : Unknown
Page : 305 pages
File Size : 42,8 Mb
Release : 2021-03
Category : Electronic
ISBN : 9780192896476

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

Hallinan argues that the substantive framework presented by the GDPR offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking.

Genetic Privacy

Graeme Laurie

Author : Graeme Laurie
Publisher : Cambridge University Press
Page : 363 pages
File Size : 45,5 Mb
Release : 2002-05-16
Category : Law
ISBN : 9781139431538

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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.

Group Privacy

Linnet Taylor,Luciano Floridi,Bart van der Sloot

Author : Linnet Taylor,Luciano Floridi,Bart van der Sloot
Publisher : Springer
Page : 237 pages
File Size : 45,7 Mb
Release : 2016-12-28
Category : Philosophy
ISBN : 9783319466088

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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.

The Emergence of Biolaw

Takis Vidalis

Author : Takis Vidalis
Publisher : Springer Nature
Page : 319 pages
File Size : 42,5 Mb
Release : 2022-06-20
Category : Law
ISBN : 9783031023590

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The Emergence of Biolaw by Takis Vidalis Pdf

This book introduces “biolaw” as an integrated and distinct field in contemporary legal studies. Corresponding to the legal dimension of bioethics, the term “biolaw” is already in use in academic and research activities to denote legal issues emerging mostly from advanced technological applications. This book is a genuine attempt to rationalize the field of biolaw after almost four decades of continuous production of relevant legislation and judgments worldwide. This experience is a robust basis for defending a) a separate legal object, covering the total of legal norms that govern the management of life as a natural phenomenon in all its possible forms, and b) an “evolutionary” approach that opens the discussion on a future conciliation of legal regulation with the Theory of Evolution on the ground of biolaw.

Conducting Biosocial Surveys

National Research Council,Division of Behavioral and Social Sciences and Education,Committee on Population,Committee on National Statistics,Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys

Author : National Research Council,Division of Behavioral and Social Sciences and Education,Committee on Population,Committee on National Statistics,Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys
Publisher : National Academies Press
Page : 124 pages
File Size : 41,8 Mb
Release : 2010-10-02
Category : Computers
ISBN : 9780309157063

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Conducting Biosocial Surveys by National Research Council,Division of Behavioral and Social Sciences and Education,Committee on Population,Committee on National Statistics,Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys Pdf

Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light. In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis-all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing. Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.

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

Nils Hoppe,Silvia Schnorrer,Christian Lenk

Author : Nils Hoppe,Silvia Schnorrer,Christian Lenk
Publisher : Universitätsverlag Göttingen
Page : 183 pages
File Size : 54,8 Mb
Release : 2011
Category : Medical
ISBN : 9783863950316

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The Ethical and Legal Regulation of Human Tissue and Biobank Research in Europe by Nils Hoppe,Silvia Schnorrer,Christian Lenk Pdf

"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

Beyond the HIPAA Privacy Rule

Institute of Medicine,Board on Health Care Services,Board on Health Sciences Policy,Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule

Author : Institute of Medicine,Board on Health Care Services,Board on Health Sciences Policy,Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule
Publisher : National Academies Press
Page : 334 pages
File Size : 48,6 Mb
Release : 2009-03-24
Category : Computers
ISBN : 9780309124997

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Beyond the HIPAA Privacy Rule by Institute of Medicine,Board on Health Care Services,Board on Health Sciences Policy,Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule Pdf

In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.

Social Dimensions of Privacy

Beate Roessler,Dorota Mokrosinska

Author : Beate Roessler,Dorota Mokrosinska
Publisher : Cambridge University Press
Page : 377 pages
File Size : 46,6 Mb
Release : 2015-06-26
Category : Law
ISBN : 9781107052376

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Social Dimensions of Privacy by Beate Roessler,Dorota Mokrosinska Pdf

An interdisciplinary group of privacy scholars explores social meaning and value of privacy in new privacy-sensitive areas.

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

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 : 45,9 Mb
Release : 2019-01-28
Category : Science
ISBN : 9780309482479

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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.

Big Data, Health Law, and Bioethics

I. Glenn Cohen,Holly Fernandez Lynch,Effy Vayena,Urs Gasser

Author : I. Glenn Cohen,Holly Fernandez Lynch,Effy Vayena,Urs Gasser
Publisher : Cambridge University Press
Page : 374 pages
File Size : 53,6 Mb
Release : 2018-03-08
Category : Law
ISBN : 9781108153645

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Big Data, Health Law, and Bioethics by I. Glenn Cohen,Holly Fernandez Lynch,Effy Vayena,Urs Gasser Pdf

When data from all aspects of our lives can be relevant to our health - from our habits at the grocery store and our Google searches to our FitBit data and our medical records - can we really differentiate between big data and health big data? Will health big data be used for good, such as to improve drug safety, or ill, as in insurance discrimination? Will it disrupt health care (and the health care system) as we know it? Will it be possible to protect our health privacy? What barriers will there be to collecting and utilizing health big data? What role should law play, and what ethical concerns may arise? This timely, groundbreaking volume explores these questions and more from a variety of perspectives, examining how law promotes or discourages the use of big data in the health care sphere, and also what we can learn from other sectors.

The Immortal Life of Henrietta Lacks

Rebecca Skloot

Author : Rebecca Skloot
Publisher : Crown
Page : 386 pages
File Size : 53,6 Mb
Release : 2010-02-02
Category : Science
ISBN : 9780307589385

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The Immortal Life of Henrietta Lacks by Rebecca Skloot Pdf

#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.

Bio-Privacy

Nancy Yue Liu

Author : Nancy Yue Liu
Publisher : Routledge
Page : 285 pages
File Size : 44,8 Mb
Release : 2013-03
Category : Computers
ISBN : 9781136638152

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Bio-Privacy by Nancy Yue Liu Pdf

Bio-Privacy: Privacy Regulations and the Challenge of Biometrics provides an in-depth consideration of the legal issues posed by the use of biometric technology. Focusing particularly on the relationship between the use of this technology and the protection of privacy, this book draws on material across a range of jurisdictions in order to explore several key questions. What are the privacy issues in the biometric context? How are these issues currently dealt with under the law? What principles are applied? Is the current regulation satisfactory? Is it applied consistently? And, more generally, what is the most appropriate way to deal with the legal implications of biometrics? Offering an analysis, and recommendations, with a view to securing adequate human rights and personal data protection, Bio-Privacy: Privacy Regulations and the Challenge of Biometrics will be an important reference point for those with interests in the tension between freedom and security.

Human Subjects Research Regulation

I. Glenn Cohen,Holly Fernandez Lynch

Author : I. Glenn Cohen,Holly Fernandez Lynch
Publisher : MIT Press
Page : 392 pages
File Size : 46,9 Mb
Release : 2014-07-25
Category : Law
ISBN : 9780262320832

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Human Subjects Research Regulation by I. Glenn Cohen,Holly Fernandez Lynch Pdf

Experts from different disciplines offer novel ideas for improving research oversight and protection of human subjects. The current framework for the regulation of human subjects research emerged largely in reaction to the horrors of Nazi human experimentation, revealed at the Nuremburg trials, and the Tuskegee syphilis study, conducted by U.S. government researchers from 1932 to 1972. This framework, combining elements of paternalism with efforts to preserve individual autonomy, has remained fundamentally unchanged for decades. Yet, as this book documents, it has significant flaws—including its potential to burden important research, overprotect some subjects and inadequately protect others, generate inconsistent results, and lag behind developments in how research is conducted. Invigorated by the U.S. government's first steps toward change in over twenty years, Human Subjects Research Regulation brings together the leading thinkers in this field from ethics, law, medicine, and public policy to discuss how to make the system better. The result is a collection of novel ideas—some incremental, some radical—for the future of research oversight and human subject protection. After reviewing the history of U.S. research regulations, the contributors consider such topics as risk-based regulation; research involving vulnerable populations (including military personnel, children, and prisoners); the relationships among subjects, investigators, sponsors, and institutional review boards; privacy, especially regarding biospecimens and tissue banking; and the possibility of fundamental paradigm shifts. Contributors Adam Braddock, Alexander Morgan Capron, Ellen Wright Clayton, I. Glenn Cohen, Susan Cox, Amy L. Davis, Hilary Eckert, Barbara J. Evans, Nir Eyal, Heidi Li Feldman, Benjamin Fombonne, Elisa A. Hurley, Ana S. Iltis, Gail H. Javitt, Greg Koski, Nicole Lockhart, Holly Fernandez Lynch, Michael McDonald, Michelle N. Meyer, Osagie K. Obasogie, Efthimios Parasidis, Govind Persad, Rosamond Rhodes, Suzanne M. Rivera, Zachary M. Schrag, Seema K. Shah, Jeffrey Skopek, Laura Stark, Patrick Taylor, Anne Townsend, Carol Weil, Brett A. Williams, Leslie E. Wolf

Protecting Genetic Privacy In Biobanking Through Data Protection Law

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

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

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

Genetic Privacy by Graeme Laurie Pdf

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

The Emergence of Biolaw by Takis Vidalis Pdf

Conducting Biosocial Surveys by National Research Council,Division of Behavioral and Social Sciences and Education,Committee on Population,Committee on National Statistics,Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys Pdf

The Ethical and Legal Regulation of Human Tissue and Biobank Research in Europe by Nils Hoppe,Silvia Schnorrer,Christian Lenk Pdf

Beyond the HIPAA Privacy Rule by Institute of Medicine,Board on Health Care Services,Board on Health Sciences Policy,Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule Pdf

Social Dimensions of Privacy by Beate Roessler,Dorota Mokrosinska Pdf

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

Big Data, Health Law, and Bioethics by I. Glenn Cohen,Holly Fernandez Lynch,Effy Vayena,Urs Gasser Pdf

The Immortal Life of Henrietta Lacks by Rebecca Skloot Pdf

Bio-Privacy by Nancy Yue Liu Pdf

Human Subjects Research Regulation by I. Glenn Cohen,Holly Fernandez Lynch Pdf

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