[tri-med] Re: Evidence-based medicine
- From: "Karen Schuler" <karens@xxxxxxxxxxxxxxxx>
- To: <tri-med@xxxxxxxxxxxxx>
- Date: Sat, 25 Jul 2009 00:17:19 +1000
----- 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
Other related posts: