Genetic Discrimination by Employers and Insurance Companies-Towards a European Regulatory Framework

Aisling De Paor (NUIG)

Introduction

This PhD thesis explores the issues surrounding genetic discrimination by employers and insurance companies in light of the new era of genetic investigation and rapidly advancing technologies.  The research highlights the interdisciplinary nature of this area and focuses on the interaction between genetic science, technology, ethics and the law, and how best to regulate this complex area.

Advancing Genetic Technology

Initial research illustrates that ground breaking genetic discoveries and technological advances have opened up a new era in genetic exploration, and technological advances have enabled geneticists to successfully chart the genetic basis of a wide range of diseases. Genetic testing promises to potentially revolutionise health care and medical treatment. Among other things, genetic testing technology may offer the prospect of being able to detect the onset of future disabilities. It also offers the possibility of personalised medicine and can offer the possible treatment and even cures for diseases at an early stage.

Scientific advances have led to an increase in the practice of genetic testing for medical and and non- medical purposes. Some tests are used to clarify a diagnosis and direct a physician toward appropriate treatments, while other tests identify people at high risk for conditions that may be preventable. A family history of illness may be confirmed by undergoing a genetic test. Genetic testing offers opportunities for individuals to be fully informed as to their genetic status, so that they can effectively manage their health care and treatment plans. Advancing genetic science can also reveal potentially valuable profiles – for example, the prevalence of the “risk-taking” gene, which, some employers may view as highly desirable in a potential employee, while others may see this as indicative of a high-risk candidate who may financially jeopardize a company.

Questions – Legal and Ethical Implications Arising from the Use of Genetic Information by Third Parties

Questions arise, however, as to whether an appropriate framework exists to protect the interests of individuals (specifically to protect the privacy of sensitive genetic information, and to prevent genetic discrimination) and also to encourage further advances in the scientific field. With these genetic advances come new economic opportunities, together with ethical, social and legal considerations.

Apart from the ethical issues arising, such as a person’s right not to know and the psychological consequences of knowing one’s genetic make-up, one of the main concerns arising is the potential use of genetic testing to discriminate. Genetic discrimination refers to the differential treatment of individuals or their relatives based on an apparent, or perceived genetic variation from the “normal” human genes. Every individual is a potential victim of genetic discrimination, as no one has “perfect” genes, and everyone carries genes that predispose to a variety of common illnesses.

This research examines how interested third parties may use the results of genetic tests (as well as genetic information elicited from family history) to discriminate based on perceptions of long- term health risks and possible future disabilities. There is a particular focus on the employment and insurance contexts in illustrating how employers and insurance companies have an interest in utilising genetic information as a powerful predictive tool.  Although genetic testing by employers and insurance companies is not yet taking place on a widespread basis, advancing genetic technology indicates that testing will inevitably become cheaper, more sophisticated and more readily accessible for non- medical purposes.

Comparative Analysis

In light of the impact of genetic discrimination in employment and insurance, the current legal position at national, European and international level will be analysed. A comparative analysis of the legislation will be undertaken, assessing the effectiveness of legal frameworks in addressing genetic discrimination by employers and insurers.   In particular, this research will focus on the importance of engaging in a transatlantic dialogue in this area - the United States’ position will therefore be examined and an assessment made as to whether a similar framework should be adopted to deal with genetic discrimination at European level.

In 2008, the United States introduced robust legislation, the Genetic Information Non-Discrimination Act (GINA). GINA forbids insurers asking for genetic tests to be performed or to assess existing results in order to set premiums or determine eligibility of enrolment. The legislation also prohibits employers from using genetic information in hiring, firing or promoting employees. The legislation will be analysed and an assessment made as to how this new regulatory regime has been received in practice. The policies and reasons behind the legislation will also be examined. There is currently no concrete European level regulation to protect the privacy of genetic information or to prevent the discriminatory use of such information.  Instead there is a patchwork of varying (and arguably inadequate) laws throughout EU Member States.

Urgency has been added to the debate by the adoption of the United Nations Convention on the Rights of Persons with Disabilities which prohibits discrimination in a range of fields including employment (Article 25 (e)).The EU ratifed in December 2010. There is now a responsibility on the European Institutions to seriously reflect on the case for some form of legislative or other response. The signing and ratification of the United Nations Convention on the Rights of Persons with Disabilities by the EU (which represents the first time the EU has ratified an international human rights treaty) gives added impetus to the argument that a European level response is both inevitable and necessary. Genetic discrimination has already been singled out by the European Commission as a priority area of reform (for example, Article 21.1 of the EU Charter of Fundamental Rights expressly prohibits discrimination based on genetic features).

Objectives

As interest in genetic science is growing, appropriate regulation is vital. If left inadequately regulated, there is a real possibility that discrimination will become more widespread and that employers, insurance companies (and other interested third parties) will take advantage of individuals and misuse sensitive genetic information.  Such a legislative and policy vacuum could further setback the inclusion of persons with disabilities (and older persons) into society. In order to take advantage of genetic developments, careful consideration of the ethical issues and appropriate legal safeguards are necessary, having regard to the potential for abuse and the fundamental human rights at stake.

Keeping in mind the technological advances (and its future orientation) the ethical context and the balance struck in the US legislation this research will examine the options for a European level legal response possibly in the shape of a new genetic information non-discrimination Directive (or an amendment to existing Directives) and explore whether a sufficient case exists for such a response.  This research engages an interdisciplinary discussion, bringing together scientific, ethical and legal perspectives to address this issue of genetic discrimination, and will aim to use this interdisciplinary approach in working toward regulation of the area.