Genetic discrimination and life insurance: a systematic review of the evidence

Joly et al. BMC Medicine 2013, 11:25 http://www.biomedcentral.com/1741-7015/11/25 RESEARCH ARTICLE Open Access Genetic discrimination and life insurance: a systematic review of the evidence Yann Joly1*, Ida Ngueng Feze1 and Jacques Simard2 Abstract Background: Since the late 1980s, genetic discrimination has remained one of the major concerns associated with genetic research and clinical genetics. Europe has adopted a plethora of laws and policies, both at the regional and national levels, to prevent insurers from having access to genetic information for underwriting. Legislators from the United States and the United Kingdom have also felt compelled to adopt protective measures specifically addressing genetics and insurance. But does the available evidence really confirm the popular apprehension about genetic discrimination and the subsequent genetic exceptionalism? Methods: This paper presents the results of a systematic, critical review of over 20 years of genetic discrimination studies in the context of life insurance. Results: The available data clearly document the existence of individual cases of genetic discrimination. The significance of this initial finding is, however, greatly diminished by four observations. First, the methodology used in most of the studies is not sufficiently robust to clearly establish either the prevalence or the impact of discriminatory practices. Second, the current body of evidence was mostly developed around a small number of ‘classic’ genetic conditions. Third, the heterogeneity and small scope of most of the studies prevents formal statistical analysis of the aggregate results. Fourth, the small number of reported genetic discrimination cases in some studies could indicate that these incidents took place due to occasional errors, rather than the voluntary or planned choice, of the insurers. Conclusion: Important methodological limitations and inconsistencies among the studies considered make it extremely difficult, at the moment, to justify policy action taken on the basis of evidence alone. Nonetheless, other empirical and theoretical factors have emerged (for example, the prevalence and impact of the fear of genetic discrimination among patients and research participants, the (un)importance of genetic information for the commercial viability of the private life insurance industry, and the need to develop more equitable schemes of access to life insurance) that should be considered along with the available evidence of genetic discrimination for a more holistic view of the debate. Keywords: Evidence, genetic discrimination, genetic exceptionalism, GINA, life insurance, personalized medicine, stigmatization, systematic review Background The prototypical issue used when discussing the ethical, legal and social issues associated with scientific progress in genetics has been genetic discrimination (GD). Lawyers and ethicists have been quick to point out the risk that uninhibited genetic progress would entice governments * Correspondence: 1 Department of Human Genetics, Faculty of Medicine, McGill University, 740 Dr Penfield Avenue, Suite 5200, Montreal, H3A 1A5 Canada Full list of author information is available at the end of the article and institutions to treat people differently on the basis of their genetic constitution [1]. GD has been defined in many ways, a mark of the influence of divergent sociocultural and scholarly backgrounds. Insurers write of ‘rational (actuarial)-irrational discrimination’ [2], lawyers write of ‘legal-illegal (illicit) discrimination’ [3], whereas patients generally adopt a much broader definition encompassing all differential, negative treatments of an individual based on his or her genetic makeup [4]. However defined, widespread GD could potentially result in practices that © 2013 Joly et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Joly et al. BMC Medicine 2013, 11:25 http://www.biomedcentral.com/1741-7015/11/25 exclude segments of the population from access to basic social necessities such as healthcare, insurance, housing, reproductive freedom and employment. Mass media has joined the debate, ensuring that the issue of GD is not confined to isolated academic discourse [5]. Among the fields of potential discrimination, one of the most commonly-debated topics has been the use of genetic information by the insurance industry to select applicants and determine insurance premiums. The dual nature of personal insurance, which is partly considered as both a public and private good in most jurisdictions, and the relatively limited amount of public trust in the practices of the private insurance sector might explain some of this attention. Policymakers themselves have entered the arena of debate following substantial pressure from their constituents. In continental Europe, the legislative response has been swift and strong. GD is prohibited by the Convention on Biomedicine (1997), the Charter of Fundamental Rights of the European Union (2000), and the national legislation of many individual countries [6]. In the United States, the much-discussed Genetic Information Nondiscrimination Act of 2008 (GINA) (2008) offers protection mainly in the domains of health insurance and employment [7]. In the United Kingdom, the Association of British Insurers and the British government have agreed on a Concordat and Moratorium on Genetics and Insurance that significantly restricts the capacity of British insurers to request genetic information from insurance applicants [8]. Australian (2008 amendment to the Disability Discrimination Act), Canadian and East Asian policymakers have also been active in this area, although less so than their European counterparts [6,9]. This paper focuses on GD in the field of life insurance. Life insurance facilitates the economic security of the policy holder. It is often described as a quasi-essential social good, a gateway good necessary to have access to important social and economic activities that provide considerable peace of mind to the policyholder [10]. Access to life insurance is far from universal and it must generally be purchased through a contractual agreement with a private insurance company. The majority of life insurance applicants are accepted at a standard rate set by insurance companies. Nevertheless, for the small group of individuals excluded from the common pool, the consequences can be dire [11]. Is the substantial attention given to the question of GD in academic literature, popular media and policymaking circles justified by the empirical evidence currently available? In other words, are the observed concerns and responses based on documented cases of discrimination, anecdotes or other less visible (...truncated)