Bill S-201, the Genetic Non-Discrimination Act in Canada
Since the dawn of modern man, we as a species have been obsessed with the categorization of ourselves. The first primary way, by the obvious: skin colour, eyes, hair, genitalia. Those items easy to pick out with a glance. As the world shrank with widespread travel and discovery, we then began to subcategorize with language and religion. Of course all of these categories intermingle with each other. Unfortunately, as we discovered the differences we immediately started ranking and stereotyping groups. Being a victim of this ‘stereotyping’ in my early years, I can say it certainly made its impact on me. Flash forward to today, we still have not evolved past racial discrimination across the world but I can say without a doubt that Canada, based on my own perspective, has improved dramatically. Progress, or is it? Canada in particular has allowed a new type of discrimination to infiltrate amongst us. Other nations in Europe have recognized it and the US has even commenced dealing with it. But Canada seems to be a little further behind. Bill S-2011 is the new issue of genetic discrimination.
Genetics has really been a science for many years with its most notable point of origin Gregor Mendel (1822-1884)2, of which the term Mendelian genetics is drawn from. He bred a couple of varieties of pea plants, green and yellow peas, also tracking a number of other physical traits. Through all his work he discovered dominant and recessive genes and with this information human kind became quite proficient at being able to calculate the probability of different phenotypic (visible expression of the genes) outcomes. We will return to the use of the term “probability” in a second. As science progressed, we started to unlock the structure of DNA (the basic coding of life) and further endeavour to fully understand how this code is read and translated into proteins, tissues and systems. Canada hosts a number of prominent researchers in this arena, many concentrated with grand facilities in the Toronto Discovery District as well as all across Ontario. Since Venter et al.3 with Celera Corp. attempted a “shot-gun” mass sequencing of the human genome years ago, we have discovered a lot of changes happen after the first stage of the DNA being read. Having worked at MDS Proteomics myself, the goal with this organization was originally to map the human proteome in similar fashion to Venter/Celera but it became abundantly clear this was a much more ambitious project than the genome, and to this day, we are still a long way from completing the task. Why is this?
Circling back to the term “probability” in genetics now, it’s an important thing to understand. We use this term because we often find exceptions to a calculated model. For instance, some critically acclaimed work on a world scale performed in the arena of cystic fibrosis was conducted at the Hospital for Sick Children in Toronto by Dr Lap-Chee Tsui.4 In short, there was a known genetic sequence (gene) on chromosome 7 (of 23) known to have some strong hand in predicting whether a person has CF or not, but with this given sequence there was a full range of disease severity. Dr Tsui’s (and many other’s) further work went on to discover there are many complexities that changed how this gene was expressed and the variety of impacts this differential expression had on net result (and this work continues to this day revealing more and more). To summarize, just because you have the particular marker characterizing a particular gene, it doesn’t mean you express it the same way. The human body, and any living model for that matter, is complex and interactions with other genes or systems cannot always be predicted. One mutation putting you at a disadvantage could give you an advantage in another scenario. An example of this is sickle cell anemia sufferers of certain ages are generally immune to the effects of Malaria due to the fact that their mutated red blood cells prevent the malaria parasite from effectively propagating.5
Armed with all these examples and some knowledge above, lets look at insurance companies doing business in Canada. When you make arrangements to take on new life insurance policy or critical illness plan they go through an extensive questionnaire, they can draw blood, cheek cells by swab, possibly urine, etc. What they do next with these samples is send them to a regional lab and have your samples tested against a number of markers well as the standard drug screens and metabolites. That’s why Bill S-201 is so important. It’s one thing to make a claim of being smoke or drug free and then get tested to reveal the contrary — you have a choice in this case and you made the wrong one. But, if these samples are being tested for particular markers (some may not even be outlined) and evaluations are being made on your genetic make up, is this fair? You could be an exemplary athlete with markers for heart disease but because you are constantly monitored, exercise and eat right, is it fair that you are judged based on what that marker typically results in with your average human being?
We are a long way from being able to nail down final outcome based on genetic predisposition. Using this type of information to guide or make one aware of possible scenarios is the best use for this type of analysis and the knowledge that comes with it is great when determining wide scale calls to action in health care. But never should it be used to discriminate. Bill S-201 has not passed as of yet but has received much press and shows promise to be passed. Let’s hope Canada will also take a stand and limit this discrimination which is already occurring.
This post was written by Ranjan Mukherjee
1. Bill S-201 :This enactment prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract with, or offering specific conditions in a contract with the individual. Exceptions are provided for medical practitioners and researchers, as well as for insurance providers in respect of high-value insurance contracts if provincial laws expressly permit a requirement that existing genetic test results be disclosed.The enactment amends the Canada Labour Code to protect employees from being required to undergo or to disclose the results of a genetic test, and provides employees with other protections related to genetic testing and test results. It also amends the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics. http://openparliament.ca/bills/41-2/S-201/↩
2. Mendel, Gregor. 1866. Versuche über Plflanzenhybriden. Verhandlungen des naturforschenden Vereines in Brünn, Bd. IV für das Jahr 1865, Abhandlungen, 3–47.↩
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5. Protective Effects of the Sickle Cell Gene Against Malaria Morbidity and Mortality. Aidoo M, Terlouw DJ, Kolczak MS, McElroy PD, ter Kuile FO, Kariuki S, Nahlen BL, Lal AA, Udhayakumar V. Lancet 2002; 359:1311-1312.↩