Genetic Discrimination - A Double Edged Sword

The brave new world of genetic screening to identify any genetic predisposition to particular diseases has opened a Pandora’s box in the realms of equality, human rights and social justice to name a few. Geller et al have defined genetic discrimination as the differential treatment of individuals or their relatives on the grounds of actual or presumed hereditary differences.  

It must be conceded that the advantage of genetic screening at birth or an early age, enables carefully planned medical management aimed to postpone the onset, effectively treat, and possibly cure genetically based conditions.  The other side of the coin is not as encouraging, such genetic information may be used by organisations such as life insurance companies to restrict or deny insurance on the grounds of family history of disease or the results of genetic screening, which is argued to amount to genetic discrimination.

A major study conducted recently in Australia, the Australian Genetic Discrimination Project inquired into the nature and degree of genetic discrimination.  The project was underpinned by the notion that a person’s genetic profile is capable of providing a benefit  in terms of disease prevention and management on one hand and disadvantage in terms of rendering the individual vulnerable to discrimination on the other.  The results indicated that genetic discrimination by life insurers was most concerning to the respondents in the study. Although each respondent was in good health and not diagnosed with the genetic disease at the time of any alleged discrimination, the respondents believed that due to family history or genetic screening, that they had a hereditary risk to develop a particular disease.  

Applicants for insurance generally have a duty to make full and frank disclosure pursuant to the Insurance Contracts Act 1984 (Cth). Based on this information, some insurers denied insurance to the respondents in the above study, whilst others imposed onerously high premiums or incorporated exclusion clauses in the policies for claims of cover at the onset of specific diseases. The implications of such genetic discrimination are potentially two-fold.  Firstly, given that genetic screening is voluntary in Australia, there is some concern that it may become a deterrent for individuals to undergo screening. Consequently, this may result in failure to detect and treat diseases at an early stage, particularly where preventive measures are available for specific genetic disorders.  There is likely to be a private and a public cost involved in treating preventable genetic disorders which are diagnosed at a later stage of the disease.  Secondly, although it may not be equitable or socially palatable, it is argued by some that insurers are entitled to use genetic information to calculate risk for the purposes of their commercial viability.

In accordance with s.43 of the Equal Opportunity Act 1995(Vic) and s.46 of the Disability Discrimination Act 1992 (Vic) respectively, the insurer is entitled to exemption from discrimination provided that the actuarial data used to refuse insurance is deemed reasonable for the insurer to rely upon. There is no definition of the term ‘reasonable’ in either statute. It may be thus inferred that this is within the discretion of the insurer, the General Insurance Code of Practice and/or industry standards.

The problem raised by Prof Barlow-Stewart was that the individuals who are denied insurance on the basis of their genetic predispositions or family histories may not necessarily know where to complain concerning their alleged genetic discrimination. Theoretically, an individual who alleges to be a victim of genetic discrimination by an insurer, may complain to the insurer’s internal dispute resolution service and/or insurance ombudsman but that assumes every insurance applicant has the wherewithal to do so. Where does this leave individuals from backgrounds of disability and/or disadvantage who may lack the language or skills to pursue their rights? Moreover, legal action is not an option available to all sections of society in such cases. Perhaps the possibility of incorporating the term ‘genetic discrimination’ expressly into the relevant legislation could be a starting point for discussion.

In an attempt to minimise genetic discrimination by the privatised health care system in the United States, the Genetic Information Non-Discrimination Act was enacted in 2008 although parts of it will take effect later this year. This federal legislation aims at prevention of discrimination by health insurers and employers although it should be noted that it excludes life insurance, disability insurance and long-term care insurance, thus it is not all-encompassing. There are further state-based statutes in the United States, which operate in parallel to the federal act. Although the U.S. federal act is relatively recent, Australia may draw on the experience of the U.S. when considering review of our national legislation.

Given the current economic climate and the resulting pressure faced by commercial entities to curtail financial risks, there could potentially be more reasons for refusal of insurance on the basis of a hereditary predisposition to a particular disease.  In order to deter from engaging in genetic discrimination in a wide range of fora such as insurance and employment, anti discrimination legislation at both the state and federal levels require review with wide public participation and consideration for express provisions against genetic discrimination. Only in this manner will the law be able to keep abreast of the rapid technological evolution.