Genetics and the Law

2021 ◽  
Author(s):  
Mette Hartlev
Keyword(s):  
Human Rights ◽  
Genetic Testing ◽  
Informed Consent ◽  
Genetic Research ◽  
Biomedical Science ◽  
The European Union ◽  
Human Beings ◽  
Legal Principles ◽  
The Right To Privacy ◽  
The Right

This chapter discusses how the legal and ethical aspects of gene technology are both a national concern for European states and a European concern addressed by both the Council of Europe (CoE) and the European Union (EU). The CoE has been engaged in bioethical issues since the beginning of the 1980s and has adopted a number of recommendations and resolutions concerned with developments in biomedical science and technologies. Most notable is the adoption of the CoE Convention on Human Rights and Biomedicine (Oviedo Convention) in 1997, which focuses on a number of selected human rights aspects of developments in biomedicine. The Convention includes a number of general legal principles applying to medical interventions on human beings, including informed consent and the right to privacy. The chapter then assesses informed consent and genetic counselling, as well as specific issues related to genetic testing of adults, children, fetuses, and embryos. It also considers genetic research, direct-to-consumer genetic testing, genetic discrimination, gene therapy, and the protection of genetic information.

scholarly journals Privacy and Data Protection

2020 ◽  
pp. 99-162
Author(s):  
Mireille Hildebrandt
Keyword(s):  
Human Rights ◽  
Data Protection ◽  
Fundamental Rights ◽  
International Human Rights Law ◽  
The European Union ◽  
Human Rights Law ◽  
General Data Protection Regulation ◽  
The Right To Privacy ◽  
The Right Of Privacy ◽  
The Right

This chapter covers privacy and data protection. This entails a series of legal requirements for development and design, for the default settings, and for the employment of computer architectures. In addition, the chapter defines the right to privacy as a subjective right, attributed by objective law, which may be national (constitutional) law, international human rights law, or supranational law (EU fundamental rights law). The chapter first confronts the landscape of human rights law at the global, national, and EU level. It then inquires into the right of privacy, as guaranteed under the ECHR and the Charter of Fundamental Rights of the European Union (CFREU), and finally provides an extensive analysis of the new fundamental right to data protection, as guaranteed by the CFREU and protected by the General Data Protection Regulation (GDPR).

EU Laws on Privacy in Genomic Databases and Biobanking

2016 ◽  
Vol 44 (1) ◽  
pp. 128-142 ◽  
Author(s):  
David Townend
Keyword(s):  
European Union ◽  
Informed Consent ◽  
Personal Data ◽  
Genomic Data ◽  
The European Union ◽  
Right To Privacy ◽  
Council Of Europe ◽  
Genomic Databases ◽  
The Right To Privacy ◽  
The Right

Both the European Union and the Council of Europe have a bearing on privacy in genomic databases and biobanking. In terms of legislation, the processing of personal data as it relates to the right to privacy is currently largely regulated in Europe by Directive 95/46/EC, which requires that processing be “fair and lawful” and follow a set of principles, meaning that the data be processed only for stated purposes, be sufficient for the purposes of the processing, be kept only for so long as is necessary to achieve those purposes, and be kept securely and only in an identifiable state for such time as is necessary for the processing. The European privacy regime does not require the de-identification (anonymization) of personal data used in genomic databases or biobanks, and alongside this practice informed consent as well as governance and oversight mechanisms provide for the protection of genomic data.

scholarly journals Fundamental Rights and the Obligation to Publicly Disclose Information on Tax Strategy

2021 ◽  
pp. 7-20
Author(s):  
Adam Szymacha
Keyword(s):  
Human Rights ◽  
Fundamental Rights ◽  
Constitutional Court ◽  
The European Union ◽  
Academic World ◽  
The Right To Privacy ◽  
European Court ◽  
Right Of Privacy ◽  
The Right Of Privacy ◽  
The Right

The aim of the article: The presented study concerns the problem of violations of fundamental rights caused by the law regulation contained in art. 27c of the Corporate Income Tax Act in Poland. This regulation provides obligation to publish information about introduced tax strategies. Yet, it may endanger many human rights and this article focuses on two of them – the right to remain silent, and the right of privacy. The aim of this article is to make an analysis of the standards presented by the Court of Justice of the European Union and the European Court of Human Rights. Additionally, the standard presented by the Polish Constitutional Court is presented. Methodology: To decode these standards the comparative law method is used. Especially the case laws of these courts are presented and additionally, they are completed by the comparison of the acts that concern similar law institutions but come from different lawmakers. Results of the research: The results of the study do not provide a clear answer. However, they do allow for an approximation of the issue of possible violations of fundamental rights by the analyzed regulation. It is very likely that the analyzed regulation violates the right to remain silent and it is even close to certainty that the analyzed laws violate the right to privacy. The problem is not only the interference in these rights, but in its character as well. Under certain circumstances, interference with fundamental rights is acceptable but must be proportionate. Examined laws are only explained in terms of budgetary balance and the academic world points out that the purpose of this type of regulation is mainly of administrative convenience. This is far too little to consider this interference with fundamental rights imperative.

Solidarity and Social Justice in the European Union Seventy Years after the Universal Declaration of Human Rights: The Role of European Judges

2019 ◽  
Vol 76 (3-4) ◽  
pp. 138-148
Author(s):  
Francesco Zammartino
Keyword(s):  
Human Rights ◽  
Universal Declaration ◽  
Social Progress ◽  
Economic Policies ◽  
International Level ◽  
The European Union ◽  
Human Beings ◽  
Government Programs ◽  
Binding Force

Seventy Years after its proclamation, the Universal Declaration of Human Rights, despite not having a binding force for the states, still provides at international level the fundamental text from which the principles and the values for the preservation of liberty and right of people are taken. In this article, the author particularly underlines the importance of Declaration’s article 1, which states: “All human beings are born free and equal in dignity and rights”. With these words the Declaration presses states to undertake economic policies aimed at achieving economic and social progress for all individuals. Unfortunately, we also have to underline the lack of effective social policies in government programs of the E.U. Member States. The author inquires whether it is left to European judges to affirm the importance of social welfare.

The right to appeal to the European Court of Human Rights

2020 ◽  
Author(s):  
Yuliya Samovich
Keyword(s):  
Human Rights ◽  
Case Law ◽  
Legal Regulation ◽  
The European Union ◽  
Educational Organizations ◽  
European Court ◽  
Protection Of Human Rights ◽  
Judicial Procedure ◽  
The Right ◽  
Judicial Protection

The manual is devoted to making individual complaints to the European Court of human rights: peculiarities of realization of the right to appeal, conditions of admissibility and the judicial procedure of the European Court of Human Rights. The author analyses some “autonomous concepts” used in the court's case law and touches upon the possibility of limiting the right to judicial protection. The article deals with the formation and development of the individual's rights to international judicial protection, as well as the protection of human rights in universal quasi-judicial international bodies and regional judicial institutions of the European Union and the Organization of American States. This publication includes a material containing an analysis of recent changes in the legal regulation of the Institute of individual complaints. The manual is recommended for students of educational organizations of higher education, studying in the areas of bachelor's and master's degree “Jurisprudence”.

The Global Rise of Social Cash Transfers

2018 ◽  
Author(s):  
Lutz Leisering
Keyword(s):  
Human Rights ◽  
Social Security ◽  
International Organizations ◽  
Cash Transfers ◽  
Social Citizenship ◽  
Human Beings ◽  
Sociological Approach ◽  
The Poor ◽  
Social Cash Transfers ◽  
The Right

The Universal Declaration of Human Rights (1948) proclaimed the equality of all human beings in dignity and rights. The right to social security, however, has been taken more seriously only since the 2000s, through calls for ‘Social security for all’ and ‘Leaving no one behind’. The book investigates a major response, social cash transfers to the poor. The idea of simply giving money to the poor had been rejected by all major development organizations until the 1990s, but since the early 2000s, social cash transfers have mushroomed in the global South and on agendas of international organizations. How come? What programmes have emerged in which countries? How inclusive are the programmes? What models have international organizations devised? Based on unique quantitative and qualitative data, the book takes stock of all identifiable cash transfers in all Southern countries and of the views of all major international organizations. The author argues that cash transfers reflect broader changes: new understandings of development, of human rights, of global risks, of the social responsibility of governments, and of universalism. Social cash transfers have turned the poor from objects of charity into rights-holders and agents of their own lives and of development. A repertoire of cash transfers has evolved that has enhanced social citizenship, but is limited by weak political commitments. The book also contributes to a general theory of social policy in development contexts, through a constructivist sociological approach that complements the dominant approaches from welfare economics and political economy and includes a theory of social assistance.

Introduction

2018 ◽  
Author(s):  
Allan Hepburn
Keyword(s):  
Human Rights ◽  
Church Of England ◽  
Freedom Of Expression ◽  
Roman Catholicism ◽  
Freedom Of Conscience ◽  
Oxford Movement ◽  
The Right To Privacy ◽  
The Right ◽  
Race And Religion ◽  
The Church

In the 1940s and 1950s, Britain was relatively uniform in terms of race and religion. The majority of Britons adhered to the Church of England, although Anglo-Catholic leanings—the last gasp of the Oxford Movement—prompted some people to convert to Roman Catholicism. Although the secularization thesis has had a tenacious grip on twentieth-century literary studies, it does not account for the flare-up of interest in religion in mid-century Britain. The ecumenical movement, which began in the 1930s in Europe, went into suspension during the war, and returned with vigour after 1945, advocated international collaboration among Christian denominations and consequently overlapped with the promotion of human rights, especially the defence of freedom of worship, the right to privacy, freedom of conscience, and freedom of expression.

Accountability in Global Governance

2020 ◽  
Author(s):  
Gisela Hirschmann
Keyword(s):  
Human Rights ◽  
Global Governance ◽  
International Organizations ◽  
Third Parties ◽  
Human Rights Violations ◽  
The European Union ◽  
Economic Rights ◽  
The Right ◽  
Austerity Policy ◽  
Comprehensive Study

How can international organizations (IOs) like the United Nations (UN) and their implementing partners be held accountable if their actions and policies violate fundamental human rights? Political scientists and legal scholars have shed a much-needed light on the limits of traditional accountability when it comes to complex global governance. However, conventional studies on IO accountability fail to systematically analyze a related, puzzling empirical trend: human rights violations that occur in the context of global governance do not go unnoticed altogether; they are investigated and sanctioned by independent third parties. This book puts forward the concept of pluralist accountability, whereby third parties hold IOs and their implementing partners accountable for human rights violations. We can expect pluralist accountability to evolve if a competitive environment stimulates third parties to enact accountability and if the implementing actors are vulnerable to human rights demands. Based on a comprehensive study of UN-mandated operations in Afghanistan, Bosnia, and Kosovo, the European Union Troika’s austerity policy, and global public–private health partnerships in India, this book demonstrates how competition and human rights vulnerability shape the evolution of pluralist accountability in response to diverse human rights violations, such as human trafficking, the violation of the rights of detainees, economic rights, and the right to consent in clinical trials. While highlighting the importance of studying alternative accountability mechanisms, this book also argues that pluralist accountability should not be regarded as a panacea for IOs’ legitimacy problems, as it is often less legalized and might cause multiple accountability disorder.

scholarly journals Evolving Legal Protections for Indigenous Peoples in Africa: Some Post-UNDRIP Reflections

2018 ◽  
Vol 26 (3) ◽  
pp. 339-365
Author(s):  
Derek Inman ◽  
Dorothée Cambou ◽  
Stefaan Smis
Keyword(s):  
Human Rights ◽  
Informed Consent ◽  
Indigenous Peoples ◽  
Regional Level ◽  
Self Determination ◽  
African Continent ◽  
African Context ◽  
United Nations Declaration ◽  
Human Rights Norms ◽  
The Right

Prior to the adoption of the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) many African states held a unified and seemingly hostile position towards the UNDRIP exemplified by the concerns outlined in the African Group's Draft Aide Memoire. In order to gain a better understanding of the protections offered to indigenous peoples on the African continent, it is necessary to examine the concerns raised in the aforementioned Draft Aide Memoire and highlight how these concerns have been addressed at the regional level, effectively changing how the human rights norms contained within the UNDRIP are seen, understood and interpreted in the African context. The purpose of this article is to do just that: to examine in particular how the issue of defining indigenous peoples has been tackled on the African continent, how the right to self-determination has unfolded for indigenous peoples in Africa and how indigenous peoples' right to free, prior and informed consent has been interpreted at the regional level.

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