Genetic Discrimination: A Case for a European Legislative Response?

2017 ◽  
Vol 24 (2) ◽  
pp. 135-159
Author(s):  
Aisling de Paor

With rapid scientific and technological advances, a new genetic era is emerging. However, these advances raise ethical and legal issues, particularly genetic discrimination, that may threaten advancing science in the absence of appropriate regulation. There is currently no concrete legislative position in this area at eu level, but rather a patchwork of diverging legislative approaches amongst Member States. Genetic discrimination has been singled out as an area of reform in Europe as evidenced, for example in eu Charter of Fundamental Rights, Article 21.1 prohibiting discrimination based on ‘genetic features.’ The United Nations Convention on the Rights of Persons with Disabilities also informs this debate and may spur legislative action. From a transatlantic perspective, the United States’ federal legislation (Genetic Information Non Discrimination Act) is noteworthy. Considering scientific and technological developments, the rights at stake and the various regulatory benchmarks, this paper explores the regulation of genetic information in the eu.

Author(s):  
Carolyn Riley Chapman ◽  
Kripa Sanjay Mehta ◽  
Brendan Parent ◽  
Arthur L Caplan

Abstract Genetic testing is becoming more widespread, and its capabilities and predictive power are growing. In this paper, we evaluate the ethical justifications for and strength of the US legal framework that aims to protect patients, research participants, and consumers from genetic discrimination in employment and health insurance settings in the context of advancing genetic technology. The Genetic Information Nondiscrimination Act (GINA) and other laws prohibit genetic and other health-related discrimination in the United States, but these laws have significant limitations, and some provisions are under threat. If accuracy and predictive power increase, specific instances of use of genetic information by employers may indeed become ethically justifiable; however, any changes to laws would need to be adopted cautiously, if at all, given that people have consented to genetic testing with the expectation that there would be no genetic discrimination in employment or health insurance settings. However, if our society values access to healthcare for both the healthy and the sick, we should uphold strict and broad prohibitions against genetic and health-related discrimination in the context of health insurance, including employer-based health insurance. This is an extremely important but often overlooked consideration in the current US debate on healthcare.


Author(s):  
John N. Drobak

Chapter 6 analyzes how the belief in shareholder primacy justified the outsourcing of millions of jobs this century, primarily to China and, under NAFTA, to Mexico. It details the failed attempts in Congress to regulate outsourcing, partly due to lobbying by business but also as a result of the belief that these kinds of activities should be left to the market. The chapter then compares the situation in the United States with the protection of labor and the limits on outsourcing in some countries in the European Union, particularly in Germany. In the European Union, the Charter of Fundamental Rights creates significant legal rights for workers and unions. Not only do many European countries have additional laws protecting labor, they also have a culture respecting the rights of workers. The chapter explains that the prevalent cultural views in the United States toward labor, unions, and government regulation make it impossible to provide similar legal protections for U.S. workers. Nonetheless, the chapter argues that we should not only learn from the E.U. experience, but should also adopt some of the European protections of labor.


2020 ◽  
Vol 16 (2) ◽  
pp. 275-305
Author(s):  
Delia Ferri

Court of Justice – Discrimination on the basis of disability – Article 21 and 26 of the Charter of Fundamental Rights – UN Convention on the Rights of Persons with Disabilities – Employment Equality Directive – Relationship between different sources of law protecting the right of persons with disabilities – Charter as interpretative aid – Charter as a parameter of validity – Scope of application of the Charter – Constitutionalisation of the UN Convention


2020 ◽  
Vol 16 (3) ◽  
pp. 366-409
Author(s):  
Philip M. Bender

AbstractThe ‘personalization of the law,’ based on new technological possibilities such as algorithmic analysis of Big Data, is said to be the wave of the future. Especially default rules seem to be particularly apt for personalization, because they are – at first glance – supposed to mirror what the parties would have wanted. This article aims to unveil the limits of preference-based personalization of default rules. In the first part, I attack default rule personalization on theoretical grounds. I analyze the theoretical underpinnings of default rule personalization, which I describe as ‘empirical subjectivism,’ and I challenge this position with arguments from classical and behavioral law and economics. I thereby develop the opposite explanatory model: ‘normative objectivism.’ The arguments presented also provide new insights of default rule analysis which are valid well beyond the personalization debate. The ‘default rule paradox,’ ‘pushing vs pulling default rules,’ or the analysis of default rules as ‘property rules’ and as ‘rules of civility’ are some examples. In the second part, I attack default rule personalization on constitutional grounds with particular focus on the Constitutions of the United States and Germany, as well as the European Charter of Fundamental Rights. So far, neither default rules nor personalization have received a detailed analysis based on constitutional principles. My article provides this analysis with regard to the principles of freedom and equality. I show how personalization reduces freedom in the private and public sphere, because the so-called choice- or agency-dimension of freedom will be significantly limited. In broader terms, the paternalistic tendencies of personalization will trigger the replacement of the ‘entrepreneur’ and ‘citizen’ by the ‘consumer’ as role-model of societal organization. Economically, this development will be accompanied by a shift from capitalism to what I call ‘micro-socialism.’ With regard to the principle of equality, I analyze how personalization leads to inequality by distinguishing ‘intra-preference-classifications’ and ‘inter-preference-classifications.’ I then present justification problems, especially with regard to discriminations that trigger strict and intermediate scrutiny. Finally, I sketch out how personalization would dissolve the essence of the principle of equality and thereby trigger a shift ‘from contract to contact’ or ‘from association to accumulation,’ which is no less important than the previous societal shift ‘from status to contract’ or ‘from community to association.’ In sum, the article combines different discourses around default rules, personalization, and constitutional law, and thereby provides new insights in each of them.


2019 ◽  
Vol 5 (1) ◽  
pp. 109-120
Author(s):  
Filipe Venade de Sousa

The incorporation of the United Nations Convention on the Rights of Persons with Disabilities into the legal order of the European Union acquires a centrality relevant to the interpretation of the fundamental rules within the framework of the catalog of rights enshrined in the Charter of Fundamental Rights of the European Union. The case-law of the Court of Justice of the European Union constantly reminds us that the Convention is an integral part of the legal order of the European Union and prevails over European Union law.


2017 ◽  
Vol 107 ◽  
pp. 181-193
Author(s):  
Sylwia Majkowska-Szulc

EU–U.S. PRIVACY SHIELD AFTER A COLLISION IN THE “SAFE HARBOUR”. THE SCOPE OF PRIVACY PROTECTION AFTER THE JUDGEMENT IN THE C-362/14 SCHREMS CASETransfer of personal data is an essential element of the transatlantic trade relationship, because the EU and the United States are for each other the most important trading partners. Data transfers increasingly form an integral part of their commercial exchanges. The Court of Justice of the European Union ruling of 6 October 2015 in case C-362/14 Schrems reaffirmed the importance of the fundamental right to the protection of personal data, as enshrined in the Charter of Fundamental Rights of the EU, including the situation when such data are transferred outside the EU. In the wake of the hereinabove judgement the transatlantic data transfer has been regulated anew. European Commission has launched EU-U.S. Privacy Shield in order to ensure stronger protection for transatlantic data flows. This article aims to analyse the importance and results of the above-mentioned judgement.


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