Additional Protocol to the Convention on Human Rights and Biomedicine Concerning Genetic Testing for Health Purposes

Additional Protocol to the Convention on Human Rights and Biomedicine Concerning Genetic Testing for Health Purposes
Author: Council of Europe
Publisher: Council of Europe
Total Pages: 24
Release: 2008-01-01
Genre: Political Science
ISBN: 9789287165664

Biological and medical research has led to remarkable progress in the field of human health. The rapid developments in this sphere have prompted the Council of Europe to consider the ethical and legal aspects of applications of genetics, particularly genetic testing, and to draw up legal rules to protect fundamental human rights with regard to these applications. The new Protocol sets down principles relating inter alia to the quality of genetic services, prior information and consent and genetic counselling. It lays down general rules on the conduct of genetic tests, and, for the first time at international level, deals with the directly accessible genetic tests for which a commercial offer could develop in future. It specifies the conditions in which tests may be carried out on persons not able to consent. Also covered are the protection of private life and the right to information collected through genetic testing. Finally, the Protocol touches on genetic screening.

Biomedicine and Human Rights

Biomedicine and Human Rights
Author:
Publisher: Council of Europe
Total Pages: 200
Release: 2009
Genre: Law
ISBN:

The Convention on Human Rights and Biomedicine, also referred to as the "Oviedo Convention", celebrated the 10th anniversary of its entry into force in 2009. This legally binding instrument aims to protect the integrity, dignity and identity of all human beings and guarantees everyone, without discrimination, the respect for their rights and fundamental freedoms with regard to the application of biology and medicine. It shares with the European Convention on Human Rights the same underlying approach and many ethical principles, and provides a general framework for the protection of fundamental rights and freedoms in the field of biomedicine. The Oviedo Convention also addresses new challenges in biomedicine that are brought about by technological and scientific developments, making it a reference text for patient rights at the European level. The principles laid down in the Oviedo Convention were further developed and complemented in additional protocols in specific fields: prohibition of cloning of human beings, transplantation of organs and tissues of human origin, and biomedical research and genetic testing for health purposes.

International Health Law and Ethics

International Health Law and Ethics
Author: André den Exter
Publisher: Maklu
Total Pages: 730
Release: 2015
Genre: Health & Fitness
ISBN: 9046607925

International Health Law and Ethics. Basic Documents contains a collection of treaty documents and soft law on health care rights and health ethics, used in health law training programs. Regional documents and explanatory reports on health care rights, which are derived from international human rights law, provide a way of “unwrapping” government obligations in health care, making rights more specific, accessible and (judicially) accountable. In addition, soft law declarations and medical ethics contribute to understanding the moral meaning of human rights in health care. As such, the principles and standards provide practical guidance for States when dealing with equal access to health care services, the rights of (categories of) patients, biomedical research, organ donation and transplantation, genetics and public health. These topics structure the approach of International Health Law and Ethics. This guide covers the basic documents, while general comments and explanatory reports amplify the principles embodied in the human rights treaties. The authoritative interpretations clarify a ‘European approach’ on the State’s obligations concerning health care rights and ethics. This volume is an initiative of the Erasmus Observatory on Health Law. It will be a helpful guide for all trainers, health care professionals and students interested in human rights issues in health care.

Additional Protocol to the Convention on Human Rights and Biomedicine Concerning Genetic Testing for Health Purposes

Additional Protocol to the Convention on Human Rights and Biomedicine Concerning Genetic Testing for Health Purposes
Author:
Publisher:
Total Pages: 18
Release: 2008
Genre: Human rights
ISBN:

Biological and medical research has led to remarkable progress in the field of human health. The rapid developments in this sphere have prompted the Council of Europe to consider the ethical and legal aspects of applications of genetics, particularly genetic testing, and to draw up legal rules to protect fundamental human rights with regard to these applications. The protocol sets down principles relating inter alia to the quality of genetic services, prior information and consent and genetic counseling. It lays down general rules on the conduct of genetic tests, and, for the first time at international level, deals with the directly accessible genetic tests for which a commercial offer could develop in future. It specifies the conditions in which tests may be carried out on persons not able to consent. Also covered are the protection of private life and the right to information collected through genetic testing. Finally, the protocol touches on genetic screening.--Publisher's description.

Genetic Testing and the Governance of Risk in the Contemporary Economy

Genetic Testing and the Governance of Risk in the Contemporary Economy
Author: Lara Khoury
Publisher: Springer Nature
Total Pages: 354
Release: 2020-10-01
Genre: Law
ISBN: 3030436993

This book addresses emerging questions concerning who should bear responsibility for shouldering risk, as well as the viability of existing and experimental governance mechanisms in connection with new technologies. Scholars from 14 jurisdictions unite their efforts in this edited collection to provide a comparative analysis of how various legal systems are tackling the challenges produced by the legal aspects of genetic testing in insurance and employment. They cover the diverse set of norms that surround this issue, and share insights into relevant international, regional and national incursions into the field. By doing so, the authors offer a basis for comparative reflection, including on whether transnational standard setting might be useful or necessary for the legal aspects of genetic testing as they relate to the insurance and employment contexts. The respective texts cover a broad range of topics, including the prevalence of genetic testing in the contexts of insurance and employment, and policy factors that might affect this prevalence, such as the design of national health or social insurance systems, of private insurance schemes or the availability of low-cost direct-to-consumer genetic testing. Further, the field of genetics is gaining in importance at the international and regional levels. Relevant concepts – mainly genetic tests and genetic data/information – have been internationally defined, and these definitions have influenced definitions adopted nationally. International law also recognizes a “special status” for human genetic data. The authors therefore also consider these definitions and the recognition of the special status of human genetic data within regional and national legal orders. They investigate the range of norms that specifically address the use of genetic testing in employment and insurance, encompassing international sources – including human rights norms – that may be binding or non-binding, as well national statutory, regulatory and soft-law mechanisms. Accordingly, some of the texts examine general frameworks relevant to genetic testing in each country, including those that stem from general anti-discrimination rules and norms protecting rights to autonomy, self-determination, confidentiality and privacy. In closing, the authors provide an overview of the efficiency of their respective legal regimes’ approaches – specific and generalist – to genetic testing or disclosure of genetic information in the employment or insurance contexts, including the effect of lack of legal guidance. In this regard, some of the authors highlight the need for transnational action in the field and make recommendation for future legal developments.

Genetic Discrimination

Genetic Discrimination
Author: Gerard Quinn
Publisher: Routledge
Total Pages: 301
Release: 2014-11-20
Genre: Law
ISBN: 1135044619

As genetic technologies advance, genetic testing may well offer the prospect of detecting the onset of future disabilities. Some research also forwards that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed, or the propensity for risk-taking. As this technology becomes more prevalent, there is a danger that genetic information may be misused by third parties and that particular genetic profiles may be discriminated against by employers, by providers of social goods and services, such as insurance companies and even by educational facilities. This book explores the different forms and potential uses of genetic testing. Drawing together leading experts in disability law, bioethics, health law and a range of related fields, it highlights the ethical and legal challenges arising as a result of emerging and rapidly advancing genetic science. On examining transatlantic perspectives on the matter, chapters in the book ask whether the US Genetic Information Nondiscrimination Act (GINA) is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating fears of discrimination. The book also reviews what insights may be gained from GINA within employment and health insurance contexts, and asks how the UN Convention on the Rights of Persons with Disabilities (CRPD) may impact similar debates within the European Union. The book focuses particularly on the legislative and policy framework in the European Union, with an emphasis on the gaps in protection and the scope for specific legislative action in this area. This book will be of great interest to scholars and students of discrimination law, bioethics and disability law, and will be of considerable use to legal practitioners, medical practitioners and policy-makers in this area.

Privacy and Data Protection Issues of Biometric Applications

Privacy and Data Protection Issues of Biometric Applications
Author: Els J. Kindt
Publisher: Springer Science & Business Media
Total Pages: 988
Release: 2013-12-05
Genre: Law
ISBN: 9400775229

This book discusses all critical privacy and data protection aspects of biometric systems from a legal perspective. It contains a systematic and complete analysis of the many issues raised by these systems based on examples worldwide and provides several recommendations for a transnational regulatory framework. An appropriate legal framework is in most countries not yet in place. Biometric systems use facial images, fingerprints, iris and/or voice in an automated way to identify or to verify (identity) claims of persons. The treatise which has an interdisciplinary approach starts with explaining the functioning of biometric systems in general terms for non-specialists. It continues with a description of the legal nature of biometric data and makes a comparison with DNA and biological material and the regulation thereof. After describing the risks, the work further reviews the opinions of data protection authorities in relation to biometric systems and current and future (EU) law. A detailed legal comparative analysis is made of the situation in Belgium, France and the Netherlands. The author concludes with an evaluation of the proportionality principle and the application of data protection law to biometric data processing operations, mainly in the private sector. Pleading for more safeguards in legislation, the author makes several suggestions for a regulatory framework aiming at reducing the risks of biometric systems. They include limitations to the collection and storage of biometric data as well as technical measures, which could influence the proportionality of the processing. The text is supported by several figures and tables providing a summary of particular points of the discussion. The book also uses the 2012 biometric vocabulary adopted by ISO and contains an extensive bibliography and literature sources.

European Law and New Health Technologies

European Law and New Health Technologies
Author: Mark L Flear
Publisher: OUP Oxford
Total Pages: 2682
Release: 2013-03-14
Genre: Law
ISBN: 0191634859

Health is a matter of fundamental importance in European societies, both as a human right in itself, and as a factor in a productive workforce and therefore a healthy economy. New health technologies promise improved quality of life for patients suffering from a range of diseases, and the potential for the prevention of incidence of disease in the future. At the same time, new health technologies pose significant challenges for governments, particularly in relation to ensuring the technologies are safe, effective, and provide appropriate value for (public) money. To guard against the possible dangers arising from new health technologies, and to maximize the benefits, all European governments regulate their development, marketing, and public financing. In addition, several international institutions operating at European level, in particular the European Union, the Council of Europe, and the European Patent Office, have become involved in the regulation of new health technologies. They have done so both through traditional 'command and control' legal measures, and through other regulatory mechanisms, including guidelines, soft law, 'steering' through redistribution of resources, and private or quasi-private regulation. This collection analyses European law and its relationships with new health technologies. It uses interdisciplinary insights, particularly from law but also drawing on regulation theory, and science and technology studies, to shed new light on some of the key defining features of the relationships and especially the roles of risk, rights, ethics, and markets. The collection explores the way in which European law's engagement with new health technologies is to be legitimized, and discusses the implications for biological or biomedical citizenship.

Advance Care Decision Making in Germany and Italy

Advance Care Decision Making in Germany and Italy
Author: Stefania Negri
Publisher: Springer Science & Business Media
Total Pages: 281
Release: 2013-11-27
Genre: Law
ISBN: 364240555X

What is the situation of people who are unable to make decisions due to a physical or mental change? This book gives impulses and answers to many ethical, economical and mainly legal questions which arise and are associated with the end of life. A universal human rights approach and the analysis of the relevant European law are put in front of the presentation of the national legal situations in Italy and Germany. The most topical and controversial issues concerning advance care planning are presented as well as a transnational economic analysis on the effects of advance care planning.​

The Human Right to Science

The Human Right to Science
Author: Cesare P. R. Romano
Publisher: Oxford University Press
Total Pages: 905
Release: 2024
Genre: Law
ISBN: 0197768997

The Human Right to Science offers a thorough and systematic analysis of the right to science in all of its critical aspects. Authored by experts in international law and science policy, the book meticulously explores the right's origins, development, and normative content. In doing so, it uncovers previously unarticulated entitlements and obligations, offering new insights on human rights interconnections.