Life insurers' access to genetic information: a way out of the stalemate?

• Author: Joly, Yann

Introduction

The advent of genomics at the end of the 20th century intensified the existing debate surrounding the social, ethical, and legal issues raised by modern medicine. Genetics increased popular awareness of fundamentally important issues including the redefinition of the human being, eugenics and the organization of healthcare in liberal democracies. The general population, informed through the lens of the media, had to quickly learn and understand the meaning of complex terms and concepts such as "cloning", "genetic discrimination", "stem cells", "gene therapy", or "medically assisted reproduction".

The societal consequences of scientific developments in the field of genomics were especially visible in the areas of privacy and personal confidentiality. In the mid-1980s, progress in the development of predictive tests for Huntington's disease coincided with the first discussions in specialized fields about the risks of "genetic discrimination." (1) The emerging debate, polarized by the media, became more extensive during the 1990s. Insurers' uncompromising attitude, (2) and the growing concern of the population about the vast possibilities presented by genetics, drove political decision-makers in many countries to legislate in order to address popular concerns. (3)

However, despite intensive regulatory activity in Europe and in the United States, the socio-ethical debate on insurance and genetics has barely progressed during the last twenty years. After focussing on certain aspects of the genetics and insurance dilemma, this article will provide a critical analysis of the evolution of the debate in France and Canada. (4) Finally, the author will argue for the need to redefine the dialogue by broadening its scope, adopting a long term perspective and recognizing the need for transparency in order to exit the dead-end we are currently facing. In the current context, genetics could well be hiding a more fundamental debate about the place of insurance in the contemporary democratic state.

Characteristics of the Debate

The results of two recent North American surveys highlight the general discomfort caused by the fact that insurers could potentially use genetic information for underwriting purposes. (5) However, the two surveys share the same difficulty with regard to defining and circumscribing the precise extent of the popular sentiment. The first shows that although the majority of individuals surveyed oppose insurance companies' access to genetic data, these same individuals still perceive genetic information as being similar to other types of medical information and cannot articulate why it should be treated differently. (6) Although the results of the second study show a certain concern in the population vis-a-vis genetic discrimination, this concern seems to have had only a marginal influence on the surveyed population's decision to undergo genetic testing or not. (7) The discomfort reflected in these and other studies (8) could be explained by the difficulty of defining the concept of "genetic discrimination".

The concept of discrimination evokes a different reality for insurers, policy-makers, and the general population. Therefore, a single question about genetic discrimination may be perceived differently by various audiences. (9) For example, in order to assess if a given law or governmental practice is discriminatory or not, the Canadian judiciary will follow article 15(1) of the Canadian Charter of Rights and Freedom (10) and the corresponding case law. In this situation, discrimination is used to indicate a type of distinction that is both unjustified and based on prohibited (or analogous) grounds, i.e., unlawful discrimination. On the other hand, for an insurer, the selection and classification of life insurance applicants based on health factors and risk level is perceived as a kind of discrimination that is both rational and legal, i.e. actuarial discrimination. (11) Finally, for the general population, any type of distinction between individuals, regardless of the justification, will likely be considered discriminatory especially if it results in unfavourable treatment. (12)

Adding the term "genetic" before the word "discrimination" will then exponentially increase the complexity of the expression. First, in the interest of clarity, we ought to define what genetic discrimination means: discrimination based on genetic tests results, genetic information, genetic heritage, connection to a genetically defined population group or, more broadly, all of the above. Then, it is necessary to assess what kind of medical information should be considered as genetic. Considering that an increasingly large number of pathologies have been found to have genetic components, this could be a very challenging undertaking.

Recent publications on these subjects demonstrates the inadequacy of approaches based on a broad prohibition of genetic discrimination in insurance, (13) even though this approach is used in numerous legal texts (14) and normative documents. (15) Assuming that it would be possible to arrive at an optimal definition of what constitutes genetic information (and genetic tests), we must question the relevance of distinguishing it from other types of medical information and granting it distinct and separate protection. The advocates of genetic exceptionalism (a position that considers genetic information as different from other types of health information and warranting special treatment) have advanced various reasons in support of their position. For example, the predictive aspect and familial or populational nature of genetic information, the particularly revealing nature of DNA, and the unreliability of genetic results, etc. (16) Opponents, on the other hand, point out that the majority of elements invoked to justify genetic exceptionalism are not unique to genetic information and could also apply to other types of medical information. According to them, genetic exceptionalism is due to a social perception rather than a proven scientific reality. (17) The debate about the relevance of genetic exceptionalism, like the one about genetics and insurance, remains currently unresolved.

Finally, in countries with a universal healthcare system, the population no longer perceives life insurance as a simple "commercial product" allowing individuals to procure benefits in addition to those provided to the collectivity by the State. (18) This new perception may be due to the quasi-necessity, nowadays, of having life insurance in order to obtain certain goods considered essential to modern life, such as a house or a car. In these countries, access to a basic level of life insurance seems to be considered by many as a social necessity rather than an option for the privileged few who have sufficient financial resources. (19)

France

The debate concerning the use of genetic information by French insurers for underwriting purposes began relatively early. Already in 1991, the National Consultative Ethics Committee [CCNE] recommended in its Opinion n[degrees]25 that insurance companies be prohibited from accessing information contained in genetic databanks or to request this information from the insurance applicants. (20)

Three years later, the Loi n[degrees]94-653 du 29 juillet 1994 was enacted to limit insurers' freedom of action. This law stipulates...