Genetic Discrimination

Transatlantic Perspectives on the Case for a European Level Legal Response

Gerard Quinn,Aisling de Paor,Peter Blanck

• Publisher: Routledge
• Year: 2014
• ISBN:
  9781135044602
• Edition: 1
• Topic: Derecho
• Subtopic: Derecho médico

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.

1 Introduction

Aisling de Paor, Gerard Quinn and Peter Blanck

1. Introduction and background

Revolutionary scientific and technological advances have led to a dramatic increase in the practice of genetic testing for medical and non-medical purposes. Genetic science and technology is advancing at a significant pace, with scientists continuing to make genetic discoveries as to the makeup of the human body and the cause and effect of disease, disability and other conditions. These discoveries are facilitating technological innovation and development of a range of genetic tests that are becoming increasingly refined and sophisticated. Therefore, as genetic science continues to advance, genetic technologies inevitably become more accessible and available, in the medical context, in third-party contexts and in society in general.

In addition to providing details about an individual’s health, personality and behavioural traits, genetic testing technology provides insights into future health and offers the prospect of being able to detect the onset of future illnesses and disabilities. Therefore, advancing genetic science, in conjunction with an ageing population, is resulting in more individuals being exposed as having putative disabilities. The increasing availability of genetic information, together with the insights it offers into an individual’s future health and predisposition to disability, is valuable to a range of third parties (including employers), as well as providers of social goods and services (such as insurers).

In light of the potential for new uses and misuse of this information, the need arises to consider the flow and use of genetic information, and whether an adequate regulatory framework may be proposed to address ethical and legal issues and to protect an individual’s fundamental human rights. It is also necessary to address the evident conflict of competing interests and rights that may arise. In the absence of an appropriate regulatory framework, it is anticipated that more individuals will be excluded unnecessarily and inappropriately from a range of social and economic goods and services, potentially leading to the creation of a ‘genetic underclass.’ The absence of an appropriate regulatory framework also has the potential to stifle scientific and technological progression, with adverse implications for public health and economic growth. Accordingly, there are compelling reasons to decipher the ethical and legal issues presented and explore options available in regulation.

2. Aims and objective of book

To date, there is no European Union (EU)-level regulation protecting the privacy of genetic information or protecting against the discriminatory use of such information. Against the backdrop of rapidly advancing genetic technologies, this book aims to bring together different facets of this debate, including theoretical questions arising, challenges presented in the clinical context and conflict of rights evident in third-party contexts. This volume extrapolates the ethical and legal issues arising and examines the need for an EU-level regulatory framework.

The main focus of this book is on the regulatory questions arising, and on the need to consider the uses and misuses of genetic information, with the objective of advancing genetic science and acknowledging competing interests at stake. Although the focus is primarily on the contexts of employment and insurance, we also offer insights into additional scenarios where genetic information and genetic testing may cause concerns, such as immigration and criminal justice, and indeed in the general clinical setting. This book offers tentative suggestions as to the appropriate shape and content of a potential EU-level regulatory response.

On examining transatlantic perspectives, this book further offers insights into the United States experience and the regulatory framework in place. This will be the first United States/European Union publication examining the need for a EU response (to protect the privacy of genetic information and prevent the discriminatory use of genetic information) and exploring options available for regulating this issue at EU level, as well as the challenges with regulation. The US and the EU are grappling with similar ethical and legal dilemmas stemming from advancing genetic technology, albeit against the backdrop of different social, economic and political settings. In the US and throughout Europe (and indeed throughout the world), genetic science and technology is advancing at a rapid pace. This book highlights the merits of engaging in a transatlantic dialogue and learning from the experience of the US in addressing these ethical and legal issues, of course in consideration of other national perspectives.

This publication takes an interdisciplinary approach towards addressing genetic discrimination by engaging scientific, ethical and legal perspectives in looking towards the regulation of genetic discrimination and genetic privacy across commercial fields, primarily insurance and employment. It includes a section on genetic science and technology, the objective of which is to provide scientific context to this discussion and highlight the state of the art of genetic science, as well as the future orientation of such technologies. This book recognises the necessity of engaging in discussion that is informed of the realities and limitations of science and technology, by all stakeholders. This publication also highlights the ethical perspectives arising, which present complex challenges in the medical and non-medical contexts.

This publication includes contributions from an array of leading experts across a spectrum of interdisciplinary areas, such as science, ethics, law and public policy. The collection of contributions represents the multifaceted and interdisciplinary nature of this field, as well as different perspectives and diverse issues arising. It includes contributions from experts in Europe and the US, to reflect the transatlantic perspective. The range of authors from a variety of disciplines and the diversity of topics covered reflect the topical and cutting-edge nature of this area.

3. Origins of the book

This publication evolved from two major international conferences that the editors developed and organised on this topic. The first conference took place on 19th November 2011, at National University of Ireland, Galway. It was entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’ and was organised by the Centre for Disability Law and Policy, National University of Ireland, Galway, in conjunction with the Burton Blatt Institute at Syracuse University. The conference brought together leading experts in the area, with the objective of exploring the case for a European Union-level response to protect the privacy of genetic information and to prevent genetic discrimination.

The editors were subsequently invited to organise and hold a further conference on this topic (of the same title), which took place on 6th March 2012, at the European Parliament, Brussels. This event was funded, in part, by a New Ideas Scheme Award from the Irish Research Council (awarded to Aisling de Paor, co-editor). The objective was to highlight this issue and spark the debate at EU level, as well as to explore the case for an EU-level response with the relevant stakeholders in the area. This conference brought together multidisciplinary experts in areas including disability law and policy, bioethics, medicine and insurance, in Europe and the United States. This conference engaged actively with politicians, the media and other interested parties and stakeholders. The editors collated the conference papers from these two events to form this volume.

4. Structure of book

This book includes five sections.

4.1 Section 1

Section 1 is entitled ‘Advances in genetic science and technology’. It comprises one chapter, written by Aisling de Paor and Noel Lowndes, which is entitled ‘Tracing the history, evolution and future orientation of genetic science and technology’. In providing a scientific and technological context to this discussion, this chapter details the history of genetic science and the future of advancing genetic technology, such as whole genome sequencing and direct-to-consumer genetic testing. The objective is to illustrate the reality and speed at which genetic science and technological innovation is advancing, resulting in benefits for health care and facilitating personalised medicine. It also examines the limitations of genetic science and technology, with reference to the predictive value of genetic technologies. This chapter provides a background for examining the myriad of ethical and legal issues arising as a result of the deluge of genetic information that is increasingly becoming available to individuals and third parties.

4.2 Section 2

Section 2 is entitled ‘Ethical and legal dilemmas arising from emerging technologies’ and comprises three chapters. This section focuses on emerging and challenging bioethical and legal issues presented as genomic science proliferates and as these cutting-edge technologies are used frequently in health care and other settings. It explores the use of genetic information and genetic testing in the clinical setting, as well as in other third-party contexts. It highlights societal implications of increased use of such technologies. The first chapter is written by Javier Romañach Cabrero and is entitled ‘Diversity ethics and the impact of genetic technologies’. It explores the theoretical framework of ‘diversity ethics’ and how this concept translates with the advent of developing genetic technologies. This chapter examines the rationale and merits of a genetically diverse society and anticipates the potential for a form of ‘new eugenics’ developing in Europe.

The next chapter is entitled ‘Genes, identity and clinical ethics under conditions of uncertainty’ by Rebecca Wolf, Michael Joseph Young, Michael Ashley Stein and Harold J. Bursztajn. This chapter examines the application of genetic science in a clinical setting. It provokes consideration of the bioethical issues arising from the use, misuse and misinterpretation of genomic medicine and technology. This chapter looks at complex issues in this area such as informed consent and the challenges presented by use of genetic technologies in this regard. It examines issues arising in the reproductive context. This chapter identifies the future landscape in health care and medicine in this new genomic era.

The final chapter in Section 2 is entitled ‘The use of genetic information outside of the therapeutic health relationship: An international perspective’ and is written by Yann Joly, J. Rosel Kim and Shahad Salman. This chapter explores the use and misuse of genetic information by third parties, from an ethical, social and legal perspective. It takes a comparative approach to present an international legal and ethical overview of the scenarios involving the use and misuse of genetic information outside of the therapeutic relationship, such as in employment and insurance. It also examines the use of genetic information in challenging scenarios such as the criminal justice context as well as its use in the immigration setting. This chapter provides an overview of some of the regulatory responses in this area at a national and an international level. It highlights evidence of genetic discrimination and other misuse of genetic information, as well as emerging case law in this field. This chapter provides practical insight into the regulatory concerns, which are further developed in Sections 3, 4 and 5.

4.3 Section 3

One objective of this publication is to examine transatlantic perspectives in this area and to highlight the merits of engaging in a transatlantic dialogue and learning from the approaches taken in comparative jurisdictions, such as the US. The US is an early entry into this field, enacting genetic-specific, federal-level legislation in the Genetic Information Nondiscrimination Act (GINA) in 2008. Section 3 focuses on the US position and the legislative response and experience. It highlights how the protection of genetic information fits within the civil rights framework of the United States and how the issue gathered momentum over the past twenty years. In examining the US legal and policy response, this section details past and current legal frameworks and offers insight into the effectiveness of the existing legal protections in practice. It examines how the US has tackled challenging ethical and legal contours of this debate. It provides historical and social context and documents the US experience of the eugenics movement, which is a key consideration in examining the current regulatory framework of GINA.

This section contains three chapters from leading experts in this area. The first chapter, by Peter Blanck and Aisling de Paor is entitled ‘US legislative and policy response: Some historical context to GINA’. With a focus on the historical and cultural background preceding the US legislative framework, this chapter explores the stark history of eugenics in the US and how it has shaped current perspectives on advancing genetic science in today’s society. This chapter introduces the Genetic Information Nondiscrimination Act 2008 (GINA).

The second chapter in this section is entitled ‘The Genetic Information Nondiscrimination Act (GINA) 2008’ by Michael Waterstone and Anya Prince. This chapter discusses the nature of GINA as a preemptive law, as well as its objective in the fields of employment and health insurance. It overviews the main provisions of the legislation, exceptions and enforcement mechanisms contained therein. In line with recent developments in the field of health care, this chapter also highlights the introduction of the Patient Protection and Affordable Care Act and its impact in this area and in health care generally.

The final chapter in this section is entitled ‘Genetic discrimination in the workplace after GINA’ and is written by Robert Olick. This chapter examines the issue of genetic discrimination in the aftermath of GINA. It looks at the effect of GINA in practice and highlights claims of genetic discrimination and the cases taken under the legislation. With a particular focus on the employment context, it explores the effectiveness of the legislation and identifies some of the challenges and evident gaps in the legislative protection offered in the US.

4.4 Section 4

Upon exploring the scientific context, background issues and in consideration of transatlantic perspectives, Section 4 focuses on the European context and details the current regulatory framework. Unlike in the US, there is no concrete EU-level regulation to protect the privacy of genetic information or to prevent the discriminatory use of such information. Section 4 is entitled ‘Building the case for a European Union regulatory response’ and contains six chapters, the objective of which is to highlight the current position in Europe and build the background to examining the potential need for an EU-level regulatory response.

This section provides a comprehensive overview of the perspectives and stakeholders in this area, including employers and insurance companies. It focuses on existing regulatory frameworks and benchmarks at international level, Council of Europe level and European Union level. It highlights the patchwork of national-level prote...