ABSTRACT

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.

section |26 pages

Advances in genetic science and technology

section |18 pages

The United States legislative experience

chapter |17 pages

US legislative and policy response

Some historical context to GINA

section |101 pages

Building the case for a European Union regulatory response

chapter |18 pages

Genetic discrimination in insurance

Lessons from Test Achats James Davey

chapter |16 pages

Employment practices in a new genomic era

Acknowledging competing rights and striking a balance

chapter |15 pages

Medical (genetic) examinations for non-health purposes

The relevance of European legal standard setting

chapter |17 pages

Accommodating genes

Disability, discrimination and international human rights law

section |31 pages

Considering the way forward for the EU

chapter |24 pages

Genetic discrimination

Is it time for the EU to take on a new challenge?