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.
Lara Khoury, Ad. E., LLB (Sherb), BCL (Oxon), DPhil (Oxon), is an Associate Professor at the Faculty of Law, McGill University in Montreal, Canada, where she acted as the Associate Dean (Research) from 2015 to 2017. She is an associate member of the Institute for Health & Social Policy and of the Biomedical Ethics Unit, an elected titular member of the International Academy of Comparative Law, and a Research Scholar at the Paul-André Crépeau Centre for Private and Comparative Law. She co-convenes the McGill Research Group on Health and Law. Her teaching and research are in the fields of comparative Medical, Public Health and Environmental Law, with a particular focus on liability issues.
Adelle Blackett, Ad. E., BA (Queen’s), LLB/BCL (McGill), LLM & JSD (Columbia), is Professor of Law & Canada Research Chair in Transnational Labour Law & Development at the Faculty of Law, McGill University in Montreal, Canada, where she directs the Labour Law and DevelopmentResearch Laboratory. A former Quebec human rights commissioner and independent International Labour Organization expert, she has authored, edited or co-edited 3 books & 5 special journal issues. She was awarded SSHRC’s Bora Laskin National Fellowship in Human Rights Research (2010), the Pierre Elliott Trudeau Foundation Fellowship (2016), and the Quebec Bar’s Christine Tourigny Award of Merit (2014).
Dr. Lukas Vanhonnaeker is a post-doctoral fellow and Course Lecturer at McGill University, Faculty of Law where he is conducting research in the field of international economic law with an emphasis on international investment law and arbitration as well as international corporate law. Dr. Vanhonnaeker completed his bilingual (French/English) bachelor’s degree in law at the Facultés Universitaires Saint-Louis (Brussels, Belgium) in 2010 and his master’s degree in law at the Catholic University of Louvain, Belgium, in 2012. He received his LL.M. in international business law from the Free University of Brussels in 2013 and he also holds an LL.M. (2014) and a PhD (2018) from McGill University.
