Bill S-201, An Act to prohibit and prevent genetic discrimination, is now before the House of Commons where it has received all-party support and passed second reading. It has been referred to Committee for review and improvements before the third and final reading.
In brief, the Act would stop insurance companies and employers from asking clients to take a genetic test or to share information about genetic tests they may have taken.
In addition, the Act would make it against the Canadian Human Rights Act to discriminate against someone based on “genetic characteristics” – which would make this akin to discriminating against someone based on race, ethnic origin, sex, sexual orientation, or disability.
Some people criticize Bill S-201 – most notably insurers. They worry about clients taking a genetic test, getting results that suggest an increased risk of developing a specific “genetic illness” and then “bulking up” on insurance. They describe insurance as a “contract whereby there is equal knowledge by the person who is applying for the insurance and the insurance company”, and they believe that private genetic testing can give clients an unfair advantage.
First, the claim that the contracting parties have equal knowledge is false. At present, insurers have a clear informational advantage. Insurers not only have access to clients’ demographic information, health information, lifestyle information and family history, they also are able to predict what this information could mean for one’s future health based on their databases from clients in similar situations. As well, they have the means to access and interpret the latest medical and scientific research, and they have considerable expertise in actuarial science (mathematical and statistical methods to assess risk).
The insurers’ informational advantage could be reduced, however, if Bill S-201 becomes law. This points us to the claim made by insurers that private genetic testing gives clients an unfair advantage.
If, in the future, clients are able to obtain genetic risk information and are able to keep this information private, at what point does their knowledge overcome the insurance companies’ knowledge and become unfair? The answer to this question is likely very complicated for at least two reasons. First, the insurers will nonetheless still have access to some genetic information through questionnaires on family history. Second, the clients will have information that can lead them to take preventive measures including accessing health care and making lifestyle changes. In other words, results indicating an increased risk for a certain disease could end up reducing that person’s risk of actually getting the disease.
Consider, for example, a woman with a family history of breast cancer. Whether she applies for insurance before or after genetic testing, the insurer will have access to her family history and will use this information in calculating insurance premiums.
Now, imagine that this woman has a genetic test confirming that she has the BRCA1 gene and that she does not disclose this information to her insurer. Does she have an unfair informational advantage? In thinking about this question, it is important to know that aging, exposure to toxins, viruses and so on are statistically much more likely to cause cancer – including breast cancer – than faulty genes. It is also important to consider the possibility that the woman who receives the genetic information will choose to have a preventive double mastectomy.
The point here is that our DNA is not our destiny. Environmental factors and personal choices matter. And, there is always luck.
If Bill S-201 becomes law, there is no doubt that this legislation will have an impact on the sale of life and health insurance. Most likely, insurers will change the way they do their calculations to account for additional uncertainty and this will result in increased premiums for everyone. This is to be expected if insurers assume that there is an increased risk of clients “bulking up” on insurance based on genetic test results and, secondly, if they believe that such test results significantly increase the risk of “genetic disease”. Insurers need to have enough money from people who are unlikely to need the insurance they have purchased in order to cover the costs for those who are likely to make an insurance claim. While both of the starting assumptions could turn out to be false, this likely will not stop insurance companies from increasing premiums and thereby reducing their risks.
Canadians understand the concept of shared risk; in large measure, this explains our public health care system. Insurers should not be encouraging us to think selfishly about keeping our premiums low by throwing some (who are perhaps at increased risk) overboard. In my view, this is what insurers are asking us to do when they speak against the proposed legislation while, at the same time, reminding us that failing to support their view will mean increased premiums for all of us.
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Our health records MUST remain confidential! Insurance companies MUST NOT be permitted access.
We pay heavily for insurance – they are a business like any other and MUST respect Doctor-Patient Confidentiality!