There are many ways to change the picture. I always encourage my families to continue to challenge themselves: don't you dare give up. Huntington, as with all genetic disorders, is a family disease, so there's a lot of work for care providers, from our support groups up and down California. There's newsletters, both local and national, there's all kinds of networks of support built in. No matter what I tell people, of course, this is not what they wanted to hear. And that's one of the issues that really needs to be addressed because when people come forward for testing, you are coming knowing that you're equally likely to get good news as bad news. Do not come in if you're coming in to find out that you're OK. Because a lot of the people do that. They wait until they believe that they are past the age when the gene expressed itself in their family. They have a bias towards coming in a little later rather than earlier, because then they're feeling a little more sure that they're OK. I really don't let them get away with that. I tell them, you know, I can look at age curves and I can tweak your risk a little bit but it's not 0. It's not even close to 0. I've seen people have quite late onset. Yes, in families it generally does cluster around the same age but I see outlanders. I would never encourage anyone to come in to be tested because they want to let themselves know that they're OK.

What we've been talking about, this is the genetics easy stuff. When Dr. Young brought up Alzheimer's, the APOE, and I don't know if you've talked about cancer genetics. Decision-making and result disclosure may be much more complex when you have what we call susceptibility and percentage risks. And that even if you come in and test and are found not to have the gene, it doesn't mean you're off the hook. Cancer genetics is one of the biggest concerns at that level because people come in, women come in to test for the breast cancer gene. They have a family history which is positive. They feel if they come in, I get tested and don't have BRCA-1 or BRCA-2 that they are going to be OK. It's not how it works. That involves a whole other level, a whole other complexity of talking about susceptibility, percentage, and that this is only part of the picture.

I can only allude to that here and maybe at some other workshop you can look at that because cancer genetics and Alzheimer's need a great deal more time to get the nuances involved.

continued: scenario overviews


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