Bill 225–The Human Rights Code Amendment Act including genetic characteristics under the Code in Manitoba

Thursday May 31, I spoke in the Manitoba Legislature on a bill which would put genetic characteristics under Manitoba's Human Rights Code.  My question on this bill to the MLA for Minto is below and beneath that are my remarks on the bill itself. 

Hon. Jon Gerrard (River Heights): Two questions. When we're talking genetics, there is the normal realm of DNA sequencing, but there's a whole other area of epigenetics and I’m wondering how much is covered.

      The second would be this: that is this really going to be protective? We have age under the Human Rights Code, but the insurance companies routinely, when they are providing travel insurance, discriminate against those who are older who have  higher risk of being ill when they travel. Airline companies in–would perhaps be considered discriminating against women when they say that women after certain time in their pregnancy can no longer fly on airplanes–

Madam Speaker: The member's time has expired.

Mr. Swan: Those are good questions and a lot for 40  seconds. The intention is to cover all forms of  genetic discrimination based on somebody's characteristics, their genetics, their DNA.

      In terms of the ability of the Human Rights Commission, of course, they have a tremendous education component and they're able to advise employers and others of their obligations. If somebody–if this law passes–was to say that they were being discriminated against, it would be up to the commission to investigate and potentially make a determination, and ultimately an adjudicator who applies the Human Rights Code would decide whether an employer or a company has violated the code.

Hon. Jon Gerrard (River Heights): Madam Speaker, I rise to talk to this bill which proposes to amend the Human Rights Code to put genetic characteristics among those which are protected in the Human Rights Code from discrimination.

      First, I want to be very clear, I support the protection from discrimination for those with genetic conditions. I support this bill, but one of the reasons that I support it is that I think it is absolutely essential that we have a full discussion at committee stage, that we hear from many individuals from diverse backgrounds. I believe that there are other aspects of what this bill is trying to achieve that may require some additional thought and some additional changes in legislation, whether this bill or another.

      This measure is very important for the protection of those with genetic conditions from discrimination is very important and is really needed so that those with genetic conditions can be sure that if they get a genetic test that the information obtained won't be used to discrimination against them. With the advances which are occurring rapidly and have occurred already in DNA sequencing and analysis and understanding epigenetics and other aspects, there is a potential for great benefits from these results.

      But there is also the potential, which we are focussing on today, for harm, and it is important that we address this potential for harm in order that we are able to benefit from the benefits of the genetic testing.

      First of all, I think it's very important to say that our Canadian medicare system, as it is been put together, is a tremendously important and robust guarantee for discrimination in most areas of health care. That some are private and may not be covered, but, clearly, the goal of the Canadian medicare system is to have equal and excellent health care provided for all. And the very goals themselves and the way that we operate, quite frankly, is to make sure that people are treated equally irrespective of the condition, whether it is genetic condition or otherwise, that they are given the best help that we possibly can, whether it is in prevention or active treatment, or in follow-up.

      So I think that's one of the things that–strengths that we have in Canada in terms of protecting people from differential health care in a sense that is not as good for those with certain genetic conditions. In fact, we would strive with those with genetic conditions to give the very best that we possibly can. And in fact knowing that the genetic condition is there may enable us to give even better health care to those individuals because we will know aspects, for instance, of why somebody, a woman, for example, has breast cancer. And in understanding why that has come about we may be able to direct the therapy very specifically. And so there are tremendous benefits in this respect.

      Second, I think that when one looks at the Human Rights Code, I don't believe for a minute that this will be adequately protective of discrimination by, for example, insurance companies. I think it's very clear that we have age under this Human Rights Code, but every day, if you want to travel, for example, and get health coverage when you're travelling, that health premium is likely to be based in part on your age, and those who are older will have to pay higher premiums because they are, generally speaking, at greater risk.

      And why does this happen? It probably happens in part because under the existing Human Rights Code discrimination means differential treatment of an individual on the basis of the individual factual or presumed membership in or association with some class or group of persons rather than the–on the basis of personal merit.

      So I suggest that this, on the basis of personal merit, which is an exclusion, could actually be applied to the–your genetic makeup is part of your personal merit. And we will have to be very careful in looking at this if we want to be effective to understand how genetic conditions will be considered separate from personal merit so that the discrimination is, in fact, prevented.

      The other aspect of this, which I'll come to in a moment when I talk about privacy, is that discrimination means failure to make reasonable accommodation for the special needs of an individual or group. And, interestingly enough, this means that you actually have to know what the genetic condition is if you're going to provide accommodation. And so you have, when we come to privacy issues, which I will talk about in a moment, an issue of where you need to make available information and where you don't.

      The–there are several other concerns that I want to address. One is the breadth of coverage. The MLA for Minto says it will include epigenetics, and I take him at his word, but it may not actually be very simple to define, you know, all genetic conditions and exactly what that means. And I think that will have to be clarified.

      The privacy issues–I suspect we will need to have, whether it is rules, regulations or legislation which takes what we have currently under the health privacy legislation and has a very careful look at this issue of genetics and genetic testing and genetic discrimination, and also about how records are kept private.

      I know there's a lot of effort, often on an individual basis by physicians, by institutions, to make, you know, sure information is kept private, but when we go into this area, I think there is a new and more complex dimension in terms of how and where things are kept private that we actually need to look at carefully and will need to have some expert analysis on.

      The other area, which I have already alluded to but I want to talk about a little bit more, and that is one of the major concerns here is discrimination by the insurance industry. And, of course, the insurance industry will handle actuarial data. That data currently can be based on many of the characteristics which are protected: age, gender, ethnic background and so on and so forth. And I think we are going to have to work carefully with the insurance industry when we get into genetic conditions to look at how we can develop code–ethical codes, as it were, so that we don't have the discrimination that we're trying to prevent.

      I think this is not going to be very simple. In fact, I think it's going to be very complex, and I believe it will take a lot of work, but it is important work and it's work that needs to be done as part of the effort to make sure that individuals with genetic conditions are protected from discrimination.