Skip to main content

Bush signs GINA!

Note: I actually wrote this yesterday.

Today was a big day! I wish I wasn’t traveling so that I could be monitoring the coverage and working the phones to try to get us a little press. Today President Bush has signed the first piece of national civil rights legislation for the new century – the Genetic Information Non-Discrimination Act.

While those of us with existing diagnosis might still find it difficult to get insurance coverage etc. at least there is now no reason to fear genetic testing (other than typical emotional responses to negative results). Now people can freely seek genetic testing that can result in early diagnosis and hopefully early treatment with better results. Now, there is no need to be afraid of seeking genetic testing that might help people find appropriate clinical trials – and thus hopefully science as a whole will be propelled forward for all sorts of genetic disorders.

After 12 years in the making, today GINA is a reality!
Labels:

Comments

Anonymous said…
I am not sure if you are not too optimistic. I am dealing disability insurance in Ontario and I am in touch with many insurance companies. And believe me, there are always ways, how to use new form of testing. Just imagine positive discrimination - if you provide your tests, you will get substantial bonus. If not, you are "suspicious" (unofficially of course) Law can't solve everything...
Best wishes!
Lorne
3:30 PM
Post a Comment

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for
1 comment
Read more

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.
Post a Comment
Read more

The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I’m h
Post a Comment
Read more