Katherine Dudman introduces genetic discrimination, the sly cousin of racism and sexism
Have you ever spared a thought for the value of the information encoded in your genes? Have others? We are constantly bombarded with headlines about the latest research to link behaviour, appearance or disease to variations in our genetic makeup. You may even have considered your own chances of developing cancer, escaping Alzheimer’s or making it through to old age. But how would you feel if your genetic information was also responsible for reduced employment prospects or disadvantaged you financially through expensive insurance premiums? In an age where whole genomes can be sequenced in hours and data disseminated instantly, the question of who has access to personal genetic information and how they are allowed to use it is becoming increasingly important.
At present, genetic discrimination is poorly defined and subject to varying interpretations. For example, it can be used to refer to discrimination against asymptomatic carriers of a genetic disease, as well as against those who are genetically predisposed to certain diseases, disabilities or behaviours. Unfortunately, there is scope for genetic discrimination to become a wider social problem, in which case the term may come to refer to something all of these groups of people may come to experience. However currently it is fair to say that the most contentious issue relates to the rights of individuals with regard to employment and the insurance industry. In this context, the most relevant definition would include people with genetic predispositions to disease or disability.
In the US, The Genetic Information Nondiscrimination Act of 2008 prevents genetic discrimination from health insurers and employers
In my opinion, the most important question to arise from consideration of the issue is this: should healthy individuals be treated differently as a result of their genetics? Instinctively, most of us would think “no”, but if we ponder the question in more detail we start to see that simple one word answers do not suffice. The question in relation to employment is perhaps the most clear-cut. An employer may be less likely to hire someone if that person is known to have an increased risk of disease or disability at some point in their working life. However, it would be generally agreed that employment opportunities should not be limited on the grounds that an individual, currently in good health, has the potential to develop a disease in the future, particularly when there is no guarantee that an illness will ever arise. A theoretical exception to this would be if a genetic test revealed a characteristic that rendered an individual incapable of carrying out a job to required standards. As of now however, there are no jobs for which genetic prerequisites exist. A more difficult question would be deciding whether there should be any jobs or diseases exempt from the general rule of disregarding future disease risk. For instance, should a potential pilot be allowed to train if a genetic test reveals a significantly increased risk of sudden cardiac death syndrome? Even if we are to accept such cases, it would seem that at the very least, employers should be prohibited from using, or perhaps even obtaining, non-job-related information.
The question in relation to the insurance industry is a little more complex. The whole premise of insurance relies on the accurate determination of risk. Should companies not be allowed to utilise all the information available in order to most precisely assess that risk? There is an argument against “genetic exceptionalism” which asks why genetic information should be treated differently to other types of available medical data. After all, records such as family histories of disease are also, technically, a form of “genetic information”.
Perhaps a more serious problem arises when individuals who could potentially benefit from a diagnosis avoid genetic testing out of fear that the results could be used against them. Restrictions on the obligation of individuals to reveal such data would therefore seem sensible, even if in future it becomes compulsory to disclose some genetic information to certain employers.
There are issues, too, with the reliability of genetic tests themselves. It is rare that a single genetic marker alone is able to clearly predict the risk of future disease or disability to an extent that could justify differential treatment. As science progresses, genetic sequence information is likely to play a smaller role as we become able to identify a more complex interplay of environmental and developmental factors when predicting disease risk. Unless tests can be independently verified as reliably assessing this risk, it would seem unfair to allow employers or insurance companies to insist on their use or to have access to the test results in order to justify differential treatment.
So what can be done to protect individuals against potential genetic discrimination? One would think that the law would be an effective tool for protecting these individuals from unfair treatment on genetic grounds, in the same way that racial or sex discrimination is prohibited. Yet in the UK there is currently no specific legislation addressing genetic discrimination. Disputes of this nature would fall under the “Disability Discrimination Act” of 1995 or the EU Employment Directive of 2000 which prohibits “direct or indirect discrimination” on the grounds of disability. It has been suggested that these pieces of legislation would be sufficient to cover genetic discrimination cases, based on the assumption that unfair treatment results from the perceived risk that an individual will develop a disability from genetic predictions. This is thought to effectively constitute discrimination “on the grounds of disability”.
Furthermore, the UK Government and the Association of British Insurers entered into a voluntary “Moratorium” in 2005 which states, among other provisions, that customers should not be required to disclose the results of genetic tests for policies up to certain values, and that the relevance of predictive tests should be independently determined by the Human Genetics Commission.
However, there is no guarantee that this Moratorium will be renewed past 2019 and interpretation of existing legislation in the courts could take a long time to reach any meaningful conclusions. It would therefore be prudent, as recommended by the Disability Rights Commission and Human Genetics Commission as early as 2002, for the original Disability Discrimination Act to be extended to include people with a “genetic predisposition to an impairment”, particularly with regard to insurance.
The first ‘thousand dollar genome’ was delivered by Illumina in 2014, with 30x coverage
It could ultimately be said that there is insufficient evidence of genetic discrimination occurring at present to merit the enactment of protective legislation. However, I would argue that potential for discrimination is sufficient to justify pre-emptive protection; the law need not always be reactive. Concerns about discrimination do exist, particularly among people with family histories of hereditary conditions. Furthermore, as the cost of genome sequencing continues to decrease and research into the genetic basis of disease progresses, new discoveries will reveal more disease-associated gene variants. Consequently, genetic discrimination and its associated issues will likely become a concern of increasing importance to large sectors of the population. After all, it is likely that most of us will have some risk factors hidden in our genes. It would therefore be wise to act now for the protection of future generations.
Katherine Dudman is a 3rd year Biochemistry student at King’s College.