Genetic Testing and the Governance of Risk in the Contemporary Economy : Comparative Reflections in the Insurance and Employment Law Contexts

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. Front Matter ....Pages i-x Front Matter ....Pages 1-1 Legal Aspects of Genetic Testing Regarding Insurance and Employment (Lara Khoury, Adelle Blackett, Lukas Vanhonnaeker)....Pages 3-67 Front Matter ....Pages 69-69 Legal Aspects of Genetic Testing Regarding Insurance in Belgium (Cindy Cornelis, Thierry Vansweevelt, Britt Weyts)....Pages 71-95 Analysis of the Use of Genetic Testing in Insurance Policy Contracts and Labour Relations in Brazil (Mario Viola de Azevedo Cunha, Leonardo Heringer Matos)....Pages 97-113 Genetic Privacy in Employment and Insurance in Canada (Hilary Young, Colleen Thrasher)....Pages 115-128 Legal Aspects of Genetic Testing Regarding Insurance and Employment in Cyprus (Theodoros Trokanas)....Pages 129-152 Czech Report on Genetic Testing for Employment and Insurance (Filip Křepelka)....Pages 153-177 The Prohibitions Against Genetic Discrimination in Estonia (Kärt Pormeister)....Pages 179-191 L’utilisation des tests génétiques dans le domaine de l’assurance en droit français et européen : une affaire d’assurance et de politique publique (Christian Byk)....Pages 193-220 Regulating Genetic Data in Insurance and Employment: The Italian “Upstream” Way (Marta Tomasi, Carlo Casonato)....Pages 221-236 Genetic Testing and the Governance of Risk in the Contemporary Economy of Japan (Yuichiro Sato)....Pages 237-248 Legal Aspects of Genetic Testing Regarding Insurance and Employment in Poland (Monika Wałachowska)....Pages 249-267 Regulating the Use of Genetic Testing by Insurers and Employers in the Province of Quebec: Is the Genetic Non-Discrimination Act Really Necessary? (Yann Joly, Gabriel Marrocco)....Pages 269-292 Genetic Analyses in the Insurance and Employment Contexts in Switzerland (Valérie Junod)....Pages 293-315 Genetic Testing, Insurance and Employment in the UK: Is the Regulatory Regime Fit for Purpose? (Gerard Porter)....Pages 317-330 Genetic Discrimination in the United States: What State and National Government Are Doing to Protect Personal Information (Eric A. Feldman, Erin Quick)....Pages 331-354