[tri-med] Re: Evidence-based medicine

----- Original Message ----- 
From: "Karen Schuler"
>>And unless a law
> appeared somewhere that I wasn't aware of it is unlawful for anyone to 
> base
> treatment / non treatment on a genetic profile. Did I miss something 
> whilst
> I was sick? Did the genetic discrimination laws not get passed?

It did get passed
The Genetic Information Nondiscrimination Act of 2008 (Pub.L. 110-233, 122 
Stat. 881, enacted May 21, 2008, GINA),

I know that it went back for amendment after I read the drafts, but the 
drafts afforded our children quite a lot of protection. Of course I always 
wanted it to go further (my own passion is for genetic profiles to be as 
confidential as HIV diagnosis - but realisticially thats never going to 
happen) but it was quite reasonable.

With GINA in place it essentially affords our children the right to be 
treated on what is wrong in conjunction with their genetic profile - not 
solely on the genetic profile.

Karen (mum to Alex, T-18 mosaic) 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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