Genetic discrimination: transatlantic perspectives on the case for a European-level legal response

Rapid dissemination of genetic testing has given rise to the concern that individuals with undesired genetic characteristics might increasingly experience social stigmatisation and discriminatory treatment, restricting their access to essential social goods and services like employment, insurance or health care. To prevent the misuse of genetic information by third parties and alleviate this growing fear of ‘genetic discrimination’, various nation-states and supranational organisations have introduced genetic non-discrimination regulations.

Genetic Discrimination: Transatlantic Perspectives on the Case for a European-level Legal Response addresses significant questions concerning the discriminatory potential and non-therapeutic dimensions of genetic testing as well as the effectiveness and socio-political consequences of genetic non-discrimination legislation. Being the first US/European Union (EU) publication to explore the need and scope for future EU-level legislative action regarding genetic discrimination, this highly insightful edited volume brings together a broad range of European and US experts specialising in various fields including disability law and policy, bio-ethics, health law, psychiatry, human rights law and insurance law. The book’s major achievement thus lies in its interdisciplinary and transatlantic approach, which permits a multifaceted discussion of the bio-ethical and legal issues surrounding the use of genetic testing as well as a timely investigation of US and EU legislative and policy frameworks in the area of genetic discrimination.

Offering a profound assessment of relevant legislations and regulatory benchmarks in the field, such as the US Genetic Information Nondiscrimination Act, the EU Charter of Fundamental Rights, the UN Convention on the Rights of Persons with Disabilities or the Oviedo Convention, Genetic Discrimination contains valuable information for scholars and practitioners of disability law and EU law as well as disability rights and human rights advocates. With regard to the gaps in current protections both at EU level and Member State level, the volume strongly argues for a future uniform EU legislation preventing genetic discrimination. It thus identifies genetic discrimination as a real-life problem with serious implications for an equal society and for the constructive development of genetic science. Despite this call for genetic-specific legislation, as best exemplified by Delia Ferri’s contribution suggesting a new EU genetic non-discrimination directive, the volume also offers critical reflection on the pitfalls of legislation based on genetic exceptionalism. Especially, Ine van Hoyweghen points out the increasing difficulty of differentiating between genetic and non-genetic information and the complex consequences this entails for genetic discrimination legislation such as the probability of leaving members of ‘non-genetic’ risk groups without adequate protection against discrimination. Genetic Discrimination also provides the reader with a more informed understanding of the difficulties of implementing future EU legislation protecting against genetic discrimination as the difficulty of defining ‘genetic information’, the existing patchwork of genetic non-discrimination legislations at Member State level and the commercial interests of employers and insurance companies all constitute major challenges to a uniform EU-level legal response.

Although the chapter by Aisling de Paor and Noel Lowndes, giving background information on the historical development of genetics, adheres to a largely medical understanding of disability and uncritically counts the detection of future disabilities among the benefits of evolving genetic technologies, thus raising serious questions for disability scholars, the volume’s overall tone strongly promotes legislation on the basis of a critical social understanding of disability. Specifically, Javier R. Cabrero’s chapter on diversity ethics explores the potentially harmful effects of genetic technologies on people with disabilities, while Janet E. Lord’s chapter criticises the medicalisation of disability within genetic science and emphasises a human rights approach to genetic discrimination based on the UN Convention on the Rights of Persons with Disabilities. Similarly, Delia Ferri underlines the centrality of the UN Convention on the Rights of Persons with Disabilities to future EU legislative action.

While the contributions’ main focus on genetic discrimination in employment and insurance, two fields with a pronounced interest in genetic data, allows for an in-depth discussion of genetic discrimination incidences and regulations in these contexts, this restriction also leaves certain significant areas in which people have experienced genetic discrimination largely unconsidered; namely social and familial contexts or public institutional domains including the military, adoption agencies or health and fertility services.

Another question hardly considered by the volume’s contributions is the link between effective legislation and the awareness among patients and practitioners of such legislation. New legal regulations cannot simply alter people’s fear of genetic discrimination if public knowledge of such legislation, as in the case of the US Genetic Information Nondiscrimination Act, remains discouragingly low. Thus, any attempt to introduce an effective European-level legal response to genetic discrimination must consider strategies to inform and educate both the public and professionals of existing legislations’ provisions.

Genetic non-discrimination legislation has the potential to contribute to a more egalitarian and inclusive society. Still, a question that Genetic Discrimination largely fails to address is the impact of such legislation on already disabled persons. If genetic data indicating potential future disease or disability are singled out for special protection, this might reinforce the stigmatisation of the already disabled or ill who with manifest symptoms no longer fall under genetic discrimination protections. The legal differentiation between asymptomatic and symptomatic disability or disease disguises the intimate link between genetic discrimination and the societal devaluation of disability which both form part of a ‘social continuum of discriminatory practices’ (Lemke 2005, 31). Thus, genetic non-discrimination legislation should only be the first step towards a more inclusive protection against any form of medical data-related discrimination, be it on the basis of future or manifest, genetic or non-genetic disease and disability.

While genetic discrimination reflects society’s prejudices against the disabled or non-healthy body, genetic testing increasingly blurs the boundary between the able-bodied and the disabled, the healthy and the non-healthy. It makes apparent the fragility of all of our bodies. Offering a plethora of new impulses for further discussion as well as for future policy and legal action to prevent the discriminatory use of genetic information, Genetic Discrimination thus constitutes valuable reading not only for disability and law scholars but for all of us, because we might one day be confronted with genetic discrimination ourselves.

Maria Kramer
Graduate School of Social Sciences and Humanities, Koç University, Istanbul, Turkey
[email protected]
© 2015, Maria Kramer
http://dx.doi.org/10.1080/09687599.2015.1075951