Thank you very much, Chairperson, and thank you to both of our witnesses for being here today.
First, Dr. Innes and Ms. Micallef, thank you for sharing information which I think gives us a very graphic example of how technological innovation can really help someone, such as the young woman you spoke about at the conference, because sometimes it's hard to go from the paper into the practical world and know how this stuff really works.
One of the questions I've had all along is based on the fact that we're hearing about some of these amazing advances in technological innovation. I do think it's an issue and you've touched upon it. I'd also ask Dr. Innes the same question. It's the issue of accessibility, and you spoke about that in terms of testing.
We heard from a witness last week, Durhane Wong-Rieger, president and chief executive officer of the Canadian Organization for Rare Disorders, who spoke from Geneva. She raised as well this issue about the lack of testing that's available for genetic diseases. It's sort of a patchwork across the country.
You say your organization is dealing with that and you're trying to navigate what's going on at the provincial level, what's available, what's covered. My question is, what can we do? We're a federal committee. We're speaking to the federal role in this. The more specific you are in terms of what you think the federal government could be doing would be helpful. I don't know whether it's through Orphanet, because Dr. Innes also touched on it, but what should we be calling on the federal government to do to make sure these innovations are actually accessible?
I don't know how much people have to pay for these innovations. You mentioned that the issue of what's covered and what isn't is a big consideration. How do we grapple with that? Under the Canada Health Act we talk about universality and portability. Sometimes even at the most basic level of getting service in another province you can run into difficulties, but here we're talking of sophisticated level of things that aren't available to people in even one province, depending on where they live. I wonder if you could address that.
Second, on genetic fairness, I do think this is a very key issue related to innovation when we talk about electronic health records, personalized medicine, and where information goes. Could you give us any concrete examples of what you were talking about when you talked about employment and insurability? Could you give us an idea of what some of your members have experienced when they faced discrimination?